The Lotus Flower

The last couple of days have been really depressing. I keep taking the drugs and waiting for the breakthrough but nothing seems to change. I even had additional problems starting Saturday with the strange feeling that someone had punched me very hard in my left thigh, from there down the whole leg tingles and started to drive me so mad in the night that I drew blood scratching it. Not that I’d have had much sleep anyway since someone had a party till 5am (amazing how someone can party for that long and still not play a single decent record). Since it was quite a warm evening I’d had the bedroom window open and around 2am it was a clear choice between sleeping and breathing.

On Sunday my mood plummeted like a stone:  I need to tell you something about a little drug called pre-gablin. I went to my pain clinic for the first time around three years ago and they told me about a drug that would get rid of the nerve pain I was experiencing, especially in my lower back and down the back of my leg. I was started on a low dose and I was so grateful for the relief I had been given. Along with a cocktail I was already taking and a new drug called phenytoin that would also settle things down. He actually told me not to read about the side effects and that should have warned me enough; of course I did read it and frightened myself to death. The pre-gablin was overshadowed by the phenytoin to such an extent that I didn’t even think about the side-effects until I missed a dose.

I started the afternoon with a sort of general irritability; nothing was right and it was like I had been given the exact opposite of rose coloured spectacles. By late afternoon I wanted to cry at anything and everything. I felt completely irrational and it was around this point that I started to realise something was wrong. We all get weepy or irrational moods sometimes so I was doing my calculations first to see if it was a natural mood fluctuation, but it wasn’t. I went to bed baffled feeling like there was nothing good in my life at all. I really worried when I had an almost sleepless night and woke up feeling the same way. After breakfast I went to my tablets and opened up the box. I have one of those lovely OAP boxes for counting out your daily meds into breakfast, lunch, tea and bed. I then realised I had missed some from the day before and that all of my pre-gablin had been missed for 24 hours. I knew then that I’d be two or three days recovering before my mood was back to normal. Pre-gablin works as a painkiller but is also a drug for Generalised Anxiety Disorder and if a dose is missed the level of anxiety can rise. Even taking the medication can increase aggression, irritation, anxiety, and suicidal thoughts but missing a dose can increase these symptoms too. I couldn’t double up on doses because that isn’t safe so I knew I would have to simply wait, taking my normal doses and waiting for the level to balance out. I wasn’t feeling suicidal thank God, but just had a general unease like something wasn’t right, but `I couldn’t put my finger on it. I was unhappy about my hair (a recent colour had gone wrong), I was unhappy about college and how my illness was impacting on my life and my work. I couldn’t focus on anything and could manage little more than watching box sets all day or crap TV all day, or playing games on Facebook.

During this time I received a present from my writing group. It was a journal called ‘The Flowering Lotus Journal’ and it was beautiful, full of little sayings I like to use from many different writers and lots of recovery wisdom with space to record my own journey. My journal depicted a red lotus flower with green leaves in a dark pond and was so similar to shot I’d taken of a white water lily that I am using for my business cards and flyers. For me the white lily image seemed to represent quietness, peace of mind and meditative thinking. It seemed just right for a business where I use my own experiences to teach others how to recover.

I looked into the meaning of the lotus flower and found that in Egyptian culture, and the religions of Buddhism and Hinduism it was a symbol of rebirth; the image of the perfect beautiful flower emerging from the murky darkness of a pond is clearly a symbol of purity coming from the darkness. The Egyptians saw it as a flower linked to the Sun and reincarnation because it emerged from the dark water and seemed to bloom afresh every day. In Hinduism the white lotus flower represents purity and spiritual enlightenment in a person, who carries out their tasks for others with no need for reward or recognition from others. In addition a folded flower was seen as an unfolded person with the potential for spiritual enlightenment and growth. All of these were very uplifting ideas and fit neatly with where I felt I was – in the dark murky waters waiting to open. In Buddhism, the flower’s ability to emerge cleanly every morning from the dirty water is a sign of purity as well as rebirth, but also a desire for change and spiritual enlightenment. I was desperately in need of change here and feeling at rock bottom. The Buddhist religion saw different qualities in the different colours of the flower. The red lotus on my journal is associated with the heart and the qualities of love and compassion in a person. So it seemed the two images – the white flower I had worked on for my cards and the red flower given to me by my group – were showing the conflict I was having between all the things I wanted to get out there and do and the need to show love and compassion. While the white flower was suggesting enough spiritual enlightenment to do for others without reward, the red flower was reminding me of the need for balance. To show the love and compassion I have shown to others to myself for a little while. So, I did what I always tell my group to do when they are lost in their recovery journey. Go back to basics and look at the list of things I need to recover. The first question I tell them to ask themselves is ‘what is the next best thing to do for my recovery?’ and this is the question I asked myself.

Now it seemed that I was the student and my students were the teachers. I was having my own words sent back to me and it was interesting looking into the mirror. I am in a constant relapse and recovery cycle which made me perfect for teaching and counselling, but this time I felt I had to sit back and take notice. I had received so many cards saying ‘take care of yourself’ and while I’d read the words I hadn’t fully understood them. The journal seemed to be poking at me and saying ‘practice what you preach’. So, as soon as my medicine levels were back to normal, I opened the new journal and started to write from the beginning.

 

Dreams and Hallucinations - I hope they were

I have spent the last couple of evenings on my own for the first time in a few weeks because of my most recent illness. I haven’t had the most successful time; improved by my brother and sister-in-law coming over for the day on Saturday and making me eat, cleaning a carpet and clearing up behind me. The morning before I had decorated myself and the bed by falling asleep with a hot cuppa and hadn’t adequately cleared up. Saturday morning I flew up the stairs with a cuppa and decorated the wall and it won’t even clean off with sugar soap. So two mugs died in two days and since they were Emma Bridgewater I felt like they needed a eulogy!

Last night I might an interesting decision on my way to returning to college and took a smaller dose of oramorph. The first annoying thing that woke me was the toilet seemed to be flushing a lot downstairs. ‘How inconvenient’ I thought first. Then my second thought was ‘whoever that is needs to go to the hospital’. I thought it would be very stupid to go down – firstly because I’m not very good on the stairs at the moment, and secondly because what sort of person comes into your house in the middle of the night and keeps flushing the toilet. I realised it must be the cats, but how they were managing to reach my very authentic high cistern I couldn't imagine. Creepy! I went back to sleep.

Then I woke up because Roy Cropper was taking up most of the bed; which was surprising because I’d bought a super-king sized bed before moving. I was also especially surprised to find myself able to kick him squarely in the back which was surprising considering how restricted my legs have been for the past week. Then there was a woman shouting ‘Hello’ up at the window and when I got to the window it was Hayley Cropper. Then I saw myself in the mirror and realised that Roy had made a mistake. I had been out taking the dog for a walk in my red waterproof with my new dark hair. It was clear that Roy had been unable to resist me. Then I actually woke up properly and began to wonder if the purple crop had been such a good idea!! Hayley Cropper had not been the look I was aiming for.

I then thought of a brilliant way to check out the toilet issue without being seen. I would just crawl up the wall and across the ceilings to get down stairs. Then they would never see me. I thought this was a great idea, but it never happened; either because I tried it or it didn’t work out or because I was actually asleep at this point. It felt really weird though, a bit like that scene with the baby in Trainspotting, but in reverse and with a much bigger baby.

I came downstairs this morning and rang my mum to come and stay. The second thing to do was ring all my friends for reassurance that I don’t look like Hayley Cropper. When I feel very well I’ll be throwing out the red anorak.

 

Grace Under Pressure

Last night was my first night alone for around 4 weeks. I wrote proudly in my blog about how mentally ready I felt to be alone and how proud I was to reach that place after years of constantly needing to be with someone. What I didn’t factor in was my physical ability to be alone. I have been in the houses of people with disabilities for many years through work or just because they have become friends and I used to wonder why their homes seemed so disordered. I realised after having carers of our own when Jez was alive that it is very rare to meet a carer who looks after your house as if it’s their own. I would often come home and find the aftermath of a meal in the kitchen, and while the most important thing was getting Jez fed I could never understand why people couldn’t simply put things back where they’d found them!

I was always looking for things that for me had an obvious place but were never in it. People never made the bed as I would make it and never cleaned the bathroom properly or aired it out. I strongly feel that people should be cared for in a dignified and caring way. Would they pull their curtains till they were nearly hanging off the rail? Would they leave damp towels and not hang them on the line – even when it was a sunny day? Would they leave someone with soup down their front, knowing they had friends or work colleagues coming round in the afternoon?

Now my priorities have changed slightly; especially since I am at the point where I might need some care of my own. I noticed yesterday how I was creating a little nest on the sofa and gathering things around me where it is easier to have them close to hand. I can no longer move things and bend into cupboards. I can’t always walk across the room and fetch them. Everything is close by and while it might not look nice to the eye, it is more functional for me.

I felt unwell yesterday but was completely sure I could manage alone last night. I came downstairs as I always do at about 8am to let the dog out and get a cup of tea. I was very stiff and painful but had managed to do a circuit of the village with the dog yesterday so put it down to overdoing it. I have always been used to struggling to do things, doing things with pain but working through that pain and managing. This morning was a total fail. I was walking up the stairs, with a cup of tea and a plate of pain au chocolat, when half way up the stairs my back was agony and my leg wouldn’t move. Then I hit the deck. Both knees hit the next step and my face soon followed! There was tea up the wall and on the carpet. The mug was in pieces and I had managed to keep hold of the pain au chocolat, so my priorities were ok. First of all, my back was in complete spasm and I wasn’t sure I’d even get up. So I had to lean on my painful knees and push myself up slowly. The pain was awful. I went back into the kitchen and sat on the stool to make another cuppa. I tried to clean the wall and carpet, but only really managed the carpet. I went back upstairs, had a large dose of morphine and went to sleep. I am not really any worse for wear now 6 hours later although the wall will have to be painted at some point. My brother and his girlfriend have thankfully arrived and are busy feeding me and cleaning up.

I have always wondered about the struggle people have when they have to accept care. It seemed simple to me and although I acknowledged the frustration and in some cases the humiliation people feel I guess it’s like anything else in life; you don’t fully understand it till it happens to you. In the last two days I have soaked the bedroom carpet because I couldn’t get upstairs and close the velux window when it started to rain. I fell asleep holding a full cup of tea which went over my pyjamas, the bedding and the bedside cabinet. Bloody annoying. I haven’t been able to cook from scratch, walk the dog, hang out my own washing or pick up dog shit. I have found it a huge struggle. Yesterday though, when the tea went everywhere in the bed I didn’t really ask for the help I needed. I was embarrassed to ask for help with my pyjamas, or to clean the table or the carpet. I didn’t want to admit I needed anything – and honestly, it is easier to ask for help from some people than others. Currently, my brother is upstairs putting up pictures and tidying. My sister-in-law is sorting the recycling, putting my washing out and cooking my lunch. They have reminded me to take my meds at certain times and kept me safe. I can ask this from them – but it is harder to ask a male friend or a friend who I don’t know as well. People have inundated me with offers of help and I have to accept that the problem is with me.

Then I thought of the phrase ‘grace under pressure’. Last year my friend Mandy and I went to Liverpool to see Elbow and during the concert Guy Garvey asked people about tattooed song lyrics and someone admitted having the words ‘grace under pressure’ tattooed on their back. Guy called him a mad bastard and gave him a big hug. They sang the song and at the time it had the line ‘we still believe in love so fuck you’ and that hit me because it made me think of the hurt of my divorce and how no one would take away my ability to love! For some reason the phrase came into my head this morning and I rethought the lyrics.

‘Grace under pressure

Cooling palm across my brow

Eyes of an angel

Lay me down’

It was then that I realised I had been thinking about this all wrong. I’d imagined standing upright against pressure in a dignified way, but still withstanding, still pushing back against the pressure. Yet, in Guy Garvey’s words I realised that being in need of help and having to ask the people around to help you is s type of pressure. Instead of fighting against the need and trying to do everything myself I should see the people who want to help as angels, trying to place a ‘cooling palm across my brow’. In this admission of being unable to manage I was admitting the pressure and the chaos and with amazing grace accepting the cooling hand of help and trusting them to ‘lay me down’. This afternoon I laid on the couch while my brother cleaned and hung pictures, fed my animals and put out my washing. My sister in law cooked me some chilli and told me when to take my drugs and yelled if I stepped away from the couch. I accepted this with grace instead of moaning, interfering and trying to do things myself. My job was to sit back and accept the help with grace.

Everything Has a Season

We are entering into September and this has always been a time of organising, sorting out and re-starting for me; even more so than spring or the New Year. I think years of school terms and being something of a perpetual student has meant that September is time to start work, buy the new school shoes (the best bit) and a new school bag. I get a feeling of cooler days, fresh starts and thinking about what I’m going to do next. This year, my new start has been slightly scuppered by being in hospital. It couldn’t have been worse timing for me. There are probably reasons for the breakdown in my health. I did have a wild summer with moving house, then 2 weeks later going to New York, then a week at home, then a week in Northumberland. In retrospect it was probably a challenge for anyone without adding a chronic illness into the mix. I had in my defence expecting to move an awful lot earlier but I couldn’t foresee that my buyer would be an inconsiderate arse.

Once the spectacular back pain wouldn’t stop and I ended up in hospital I was fully expecting them to say a kidney infection because I had suspected one for weeks. I was even expecting MS relapse until they found me the neurologist from hell who decided that 18 years of diagnosis meant nothing to him and had no bedside manner whatsoever. He made me feel like a liar and never returned as promised to check how I was and bring his superior to give me a neurological check. I ended up on a chest ward and when assessed by a medical consultant he simply took the diagnosis as MS because someone once diagnosed it – I didn’t pluck the idea out of thin air. Then he decided on an MRI of my brain as already suggested, and my spine too. I expected to be told nothing really – no MS changes and bit of wear and tear in the spine. My spine felt so bad though and I couldn’t find a usual explanation.

When the diagnosis came I was shocked and surprised. Yes, there were degenerative signs in my neck and my lumbar spine and I expected that. However, there was more that I didn’t expect; my neck from C5-C7 had a protrusion in the discs, pressing into the thecal sac and causing loss of signal. This would probably need surgery the doctor told me. Then there was something with a very long name that was basically a benign tumour in the thoracic spine at T7. These can cause extreme pain and blockages in the spinal canal causing problems with the flow of spinal fluid. Some require surgery and some require radiotherapy to shrink them. This news hit me like a tonne of bricks. I was so used to hearing the same old reasons that I never expected to hear such a positive and potentially life changing diagnosis in the short term. I did know what to say but I was very scared immediately. The word tumour is always scary and I was very happy to hear it was immediately a benign form, but I have so much I want to do and already battling so much I don’t know if I can battle with any more. I have so much pain and potential relapse to deal with every day. It requires some management and I don’t always get it right.

I have no idea how I’m going to deal with this news right now. I am on daily diazepam and morphine on top of my ordinary drugs and cannot drive. I can’t walk without crutches and feel sleepy a huge amount of the time. I can manage pain free if I take my meds and lie around watching TV, reading and sleeping but adding anything extra into the mix is risky. I am about to start my second year of college, I am just starting my own counselling and writing therapy business, and I was even looking forward to my next area of study to enhance my writing skills. I feel like I can barely manage everyday tasks like getting dressed and bathed without adding work, college and dealing with ATOS who have decided I need a medical because they feel I might be fit to work. I can only deal one day at a time. I have to deal with that day and then wake up for the next one and start afresh. I am forgetting to pay bills and feed the animals – till they object loudly!! I hope my brain becomes more able to function gradually and I become more used to living with this level of disability. I have started being able to talk about wheelchairs and why I might have to use one for a while. Yet, I haven’t wanted to tell people because I feel like this is just too much. I am untouchable, unlucky and a bloody jinx. Here I come with my latest tidal wave of misery. So I am telling people in dribs and drabs, when I feel able. I guess this is the bravest step, telling you all and waiting for the fallout. Maybe one day I will get used to it myself.

New NHS Directives

Having been in hospital for a while now I started to notice things that really piss me off. I am not going to moan about the care I received, because actually that was pretty good. It was the other patients and their behaviour that drove me crazy. I am beginning to think there should be a new NHS directive specifically for the behaviour of patients. In the same way I want to tell the world at large that leggings are not trousers, I want to tell hospital patients what is and isn't acceptable.

1. If you are on a hospital admissions unit you must be ill, or have been deemed ill enough to take up a hospital bed, so use it! If you are never on the ward because you are having coffee with friends upstairs in the canteen or walking outside for a fag to the extent that you miss meal times and drug rounds you do NOT need a hospital bed. I needed drugs so I stayed put for the drug round for two reasons; I wanted my pain relief desperately, and by doing it when the nurse was available for that purpose she could assess me and I wasn't bothering her half an hour later for drugs.

2. If you are guilty of the above offence not only do you not require a hospital bed, but you do not need morphine. Morphine is administered for extreme pain and sometimes requires the time and signature of two nurses. After four hours I needed my morphine. I did not require it 6 hours later, when I had done the run of the hospital, fetched my own sweets and magazines and had lunch in the café.

3. Just because all beds have their own phone does not mean you can make or take calls at any time of the day or night, It might be nice for you to ring your kinds at 7am and wish them a good day at school but it is not good for the person in the bed next door who needs their sleep because they are sick. Nor do I need to hear tearful late night phone calls to partners who are drunk and in the pub rather than visiting their other half - this is nothing to do with me, or the rest of the ward at 11pm.

4. In hospital it is best for everyone to wear pyjamas or as concession nightdresses that reach the floor. Mixed sex wards were stopped for the privacy and dignity of the patient, but the hospital seems to have forgotten that people of all ages and sexes are visiting wards. T-shirts, no matter how long, are not for hospital wards unless you like the fact that everyone can see your knickers as you climb into bed or walk with the physio. Neither do my visitors want to see confused old ladies who have uncovered all their blankets and are lying with their nightshirt just under their boobs. This is not dignified - and I know there are nursing reasons for shorter nightshirts but surely not being confronted with a geriatric fanny every 5 minutes is within my rights as a patient.

5. There are some nursing tasks that should not be carried out within visiting hours unless its an emergency. Hearing an old lady being told she should push because 'there's plenty up there' is not something visitors want to hear or smell.

6. An addendum to No 5 really is the age old phrase 'don't shit where you eat'. I have followed it, but this is not something the NHS are aware of. If someone needs the loo at mealtimes, they should be wheeled to a toilet. While I am eating my mince and unrecognisable vegetables I do not want to hear someone straining to poo through a thin curtain - nor do I want to smell the results.

7. In a hospital you are being cared for and you are being fed. Okay so it may not be the best food in the world but I've tasted worse and I am not well enough to make my own. There are loads of choices and willingness to make you something off the menu if you ask. If breakfast is served at 8am, eat at 8am. Do not say you are not hungry, but then want toast made specially for you at 10.30am when they are serving tea and coffee. Nor should you leave your tea, then ask for a snack at 9pm. This sort of crap means nurses are not nursing which is what they should be doing. While you are getting toast someone else is laying in pain or unable to get to a toilet. I know hospital works on its own time frame but it has to, because wards full of patients having what they want when they want it would mean a ratio of one nurse to every three patients.

8. This is very simple. Your TV is provided with headphones for a reason - use the bloody things!

9. When you pay for a TV package take advantage of all that it offers because it is expensive. It has a radio, so no one needs to bring in their own which has no headphones. More importantly it has a telephone and the telephone allows you to ring places free of charge. It is not a nurses job to ring your other half and ask him to bring the pair of pyjamas at the bottom of the right hand drawer in the white cupboard in your spare bedroom. Similarly, it is not her job to stand around and wait for your answer to the question 'should he bring anything in' while you go through your locker and check out numbers of nighties, soap and chocolate.

10. Finally, we all know words and understaffed and have the concept of the 'nurse's minute', but wouldn't it be more honest and better all round for staff to be honest. Saying 'I'll be with you in a minute' or 'just a second' is just begging for a patient to ring a bell continuously. Far better surely to say 'I am up to my ears, I'll be about twenty minutes, is that ok or is it an emergency?' or to explain what they're actually dealing with - usually a very poorly person- so that the patient can see the perspective of what nurses are dealing with on the ward.

Basically, real life is not like Casualty. There are not nurses and doctors willing or able to talk to you for hours about your life, sort out your problems and bring your family back together in the space of 50 minutes. In other countries relatives are expected to provide food for their relatives while in hospital and in places like Haiti people are being treated in the open air or in tents. We need to gain some perspective and patience, while staff need to treat each patient with kindness, understanding and explain why they can't carry out requests that really aren't their job!

He Did Not Love Me

That is the bald truth and I have known it for some time now. In the wake of the divorce becoming final I have been able to understand and accept it more. During the relationship I kept trying to run away from what was staring me in the face. I spent our entire courtship and engagement worrying that he didn’t love me in the way I loved him. He seemed to need ‘breaks’ from the relationship and what he called ‘nights off’, whereas I wanted to be with him all the time; maybe a hangover from losing my husband previously. I remember clearly that we had been going out for 3 months when it was my birthday and I was really looking forward to celebrating it with him. I was surprised when he said he wouldn’t be here, because he was going to Brands Hatch with his cousin for the last bike meet of the season. This upset me and when I talked to friends I got a mixed response; women seemed to understand why I was upset and men thought it was fine. He didn’t organise anything special instead and when I fell ill with pneumonia he still went away. Of course he left presents and a card, but it wasn’t the same as him being there. He admitted later that he had done it on purpose, to show me that he wasn’t going to disrupt the life he had built for himself and make me aware I couldn’t stop him doing what he wanted.

If I love I am all in, feet first or even head first. There is not a part of me I will not handover to the person I love. In the book ‘Eat, Pray, Love’ Elizabeth Gilbert says that if she loves someone she will give them everything – her time, her money, her dog. I recognised myself in this statement. I give everything until there is nothing left for me. I gave him my time, my money and my hope for the future. When we met I was a widow and I couldn’t believe how lucky I was to find some happiness again. I thought it was a gift after the horrible time I’d had.

I may have missed the first time I was abused emotionally by my husband. I would have put it down to stress or him feeling under the weather. His anger happened only once before we got married and I remember sitting on the bed in the middle of the night, wondering whether to pack my bags or not; I should have. We were arguing over buying a house – he was more wedded to the idea than I was. I had fallen in love with a little Victorian villa in town, with a lovely decked garden and beautifully restored. I thought it was easy to maintain, with good dog walking nearby on the common and close to college and work. The house he wanted was just out of reach for us in my opinion; it was expensive and needed an awful lot of work. I didn’t want the stress of all that work, but also wanted some money floating around spare so we could actually enjoy life. I had been wondering aloud about whether it was a good idea or not, when he suddenly turned: ‘if you don’t trust me we may as well not get married’, he snapped. The issue wasn’t about trust as far as I could see. It was about whether something was a good practical idea for both of us or not. He proclaimed to know what was best for both of us and I was beginning to suspect he was more interested in having the house than having me.

I actually started to pack the one drawer I had in his house, when he finally relented. ‘I didn’t mean that’ he said ‘it was stress talking’. I took his explanation and climbed back into bed thankful that whatever I had done to offend him had passed. And so it began.

It followed a pattern. His moods were varied and impossible to predict. For the wedding day and honeymoon it really was wonderful and I felt I had been right to hang in there. I put his moods down to being stressed by moving house (the one he wanted) and the run up to a big wedding. I hadn’t really wanted the big wedding, but he wanted to show off and ‘celebrate’. I couldn’t find an argument against celebrating, but kept worrying that it was a lot of money to spend and this was my third marriage. I wanted to be quiet and low key, with just close family and friends. He asked me why I thought I didn’t deserve a big wedding. I couldn’t think of an answer. It wasn’t that I didn’t deserve it, I just didn’t want it.

His temper was unexpected when it came and always completely sideswiped me. I would just start to feel comfortable that the relationship was ticking along nicely when he would withdraw into himself and into his study. He would push me away when I went to cuddle him and hated if I made a move on him sexually – sex was for bedtime and the bedroom and nowhere else.  The comments he made seemed like jokes or thoughtless asides that it was hard to make a fuss about. He commented that if I wanted to go on his motorbike he would have to check that the bike would take my weight. He said I looked like a little piglet naked, but then told me he meant it to be endearing.

Then he made comments about my disability – that maybe if I just tried harder or lost weight it would miraculously disappear. He wouldn’t let me keep my medication where people could see them and made me have them in a drawer that I found hard to bend and reach into. He said people didn’t need to know all about it. I asked him straight out if he was ashamed of me, but he said no of course he wasn’t. I thought about getting a Motability vehicle, but he thought it wasn’t necessary. What was so special about me that I needed a brand new car? I could just have a normal car like everyone else. I was told to buy something that he could manage to fix and look after; I agreed but he never looked after it. He would comment when he thought I wasn’t doing enough or if I’d been doing too much and felt too tired to cook tea. He wanted me to walk the dog more and do some exercise. Maybe I could have some liposuction to take some weight off my joints. One day I was going to see a client who had a very dirty house and I kept my housework clothes on. He came out of his workshop and looked at me:

 ‘I thought you had more respect for yourself than to go out like that’. He said

This time I wasn’t going to let it go: ‘Does it make you feel good to say things like that. To make other people feel small?’ I asked.

He looked startled, as if I was the aggressor. ‘Of course not’, he said

‘I think it must, I think you must need to say hateful things to others to make yourself feel better’. I then got in the car and drove away.

He said I never did anything for him. He would have sudden plans to go and look at a car or to start a new project or business and just expect me to fall in line. When my friend was taken unexpectedly ill one afternoon and ended up in A and E, we rang him because we were exhausted from waiting and standing around. I asked if he could come in and pick us up. ‘Get a taxi’ he said. A few weeks later he decided one morning he was going to Birmingham to fetch a car and would I take him? I refused because I already had plans that day. He stood shaking his head at me. He told me I was selfish and never wanted to help him with anything.

Every time we had a party or barbecue at the house and something was not done in the way he liked he would be enraged. I started to recognise the look on his face when I’d done something wrong. One bonfire night we had friends over and while he was entertaining in the field and lighting the bonfire, I was in the kitchen getting food ready. I came outside and one of our friends had lit the barbecue already, trying to help. I knew that my husband had asked me to light it after he had lit the bonfire, but it was already done. At parties I very much liked to go with the flow and not plan too much. I figured it didn’t matter when things happened as long as everyone enjoyed themselves and got fed. After everyone had left he exploded about me taking the focus away from him. He was yelling about lighting the barbecue early so no one was paying attention to the bonfire. I pointed out that it was a party and he couldn’t control what people were doing. This made him even angrier, because we had agreed a plan and I had deliberately drawn everyone away from his fire to the food. His behaviour was so out of proportion to what had happened and seemed irrational to me so I went upstairs to bed. It took a full 24 hours for him to speak to me. People argue in marriages he told me. No one can be in a good mood all the time. I kept thinking that my experience of marriage must be completely different to his. He seemed to forget I was a widow when he met me so I had another marriage to compare this to.

One evening my parents came to collect their cat; we had been looking after it when they were on holiday. The cat stayed in our static caravan with all his stuff and a litter tray. He went out to check the caravan and came in yelling about my father. They had left a litter tray with some cat poo in it. I was quite calm and said that yes it was a bit rude to have left it. My husband seemed to think it had been left specifically as a message to him. He was yelling that it was disrespectful and my father had done it on purpose. He said he knew how my father’s mind worked and he would be at home, happy because he would think of him cleaning out their cat’s shit. I couldn’t argue with him and made my way into the caravan on crutches and cleaned it up myself. Again I simply went to bed and left him seething.

If it wasn’t one thing it was another. If I was looking at him ‘cow eyed’ he would tell me that wouldn’t last. I always wanted affection he said, I was needy and practically a nymphomaniac. I thought I was better than other people. I was selfish and lazy. I left him a letter one day when I went out, propped up against the kettle – he thought I’d left him when he saw it. I explained how all his comments made me feel and that I had never in any relationship, felt so criticised and inadequate. He told me he had a tendency to be critical of those closest to him.

He rarely wanted to have sex with me. Some weeks he was keen, then other weeks he was a no go area. He was stood at the cooker one day and I came up behind him and pushed my hands into his pockets. He backed up immediately and pushed me away. He was looking past me out of the window as if he expected someone to be watching. Yet we lived in the middle of nowhere. He wanted to know why I had to turn every touch into something sexual. I wasn’t actually being sexual; it had just been a natural movement I hadn’t thought about really. It was part of a hug. Yet I became the villain of the piece: always wanting something, constantly on him and unable to control myself. If I went to bed naked and he wasn’t in the mood he told me to cover up. I felt like my desire was abnormal and I was ashamed and humiliated. I stopped making any advance towards him and as a result we barely touched each other. All affection was for the bedroom and in bed so I couldn’t surprise him. Then he came to bed later and later so that I knew he was just waiting for me to be asleep before he felt safe. He told me he found my illness a turn off. If I had been feeling poorly and rested during the day he told me I couldn’t possibly want to have sex at night. It would be wrong to have sex with a sick person, or with someone who was in pain. My illness had made me unattractive to him.

Then when the benefit cuts came in he spent all his time telling me that disabled people were given too much money. He didn’t like me to use disabled parking spaces and he pulled me up if I talked too much about my illness. He never read a single blog I wrote, but told me they were self-indulgent. He criticised my friends, especially the ones with disabilities. He said they took from me all the time and didn’t care. Every time my disabled friends bought something he pointed out it was with his tax money, neglecting to realise that I did pay tax too. He didn’t care if he made me cry about it either. If football happened to be on he would support any team that opposed Liverpool because that was where my family were from. He would get great enjoyment from shouting negative comments about Liverpuddlians and he said the cruellest things about Hillsborough that I just prayed he didn’t repeat in front of any member of the family.

Then the trolling started. He would put a deliberately inflammatory status on Facebook and then just wait for the comments to roll in. All night on the couch he would be typing back and forth, espousing views he didn’t even believe in but really enjoying the arguments he started. I used to try and smooth these arguments over or apologise for him but I gave up in the end. I could see that the best response was to ignore him, but there was always someone willing to take the bait. Long political arguments or religious ones were his favourites. As long as he could offend someone he was happy. Even other people’s statuses were easy pickings and he was particularly fond of pricking my mother’s happiness bubbles. She wrote about our visit to the Beatles museum and how much she had loved John Lennon and under other people’s positive comments he wrote: ‘John Lennon is a twat’. He could spot happiness a mile away and shit all over it. When one of his sons bought his girlfriend some beautiful flowers he commented ‘I see he is letting the side down. I’ll have to have a word’.

He was actually intelligent, but pretended not to be. He said I was pretentious and how sick he was of intellectual conversations about writing or disability. Often he would be deliberately obtuse, particularly where his parents were concerned. He would make out he had no idea what they were talking about or come out with the most boorish statement possible to make them feel stupid. He would encourage his mum to make comments that were racist or offensive in order to cause arguments at the dinner table. One of the worst arguments came after he sold his shop and the girls who worked for him were unhappy about the way he had changed; I commented they seemed to think it was my fault and I could feel an icy silence. At home he made it clear that the shop was nothing to do with me, that I always thought everything was about me and what made me think I was so important. His relationship with one of the girls at the shop worried me – she would send him cards to ‘daddy’ signed ‘from your sexy girl’. She was only 19, very provocative, and some of the comments she made on his Facebook page I really objected to because I felt they were disrespectful to me and his sons who didn’t need to see sexual comments about their father. He told me that anything that happened to do with the shop was his domain and I should keep my nose out. He didn’t see anything wrong with her comments or the glamour modelling pictures she sent to his page. Finally, after she put something very offensive about giving him oral sex, he finally agreed it was inappropriate.

Without the shop and his girls his mood seemed to deflate. He had looked forward to spending time at home, doing up the house and enjoying time together. However, he seemed to lose all focus and the house seemed to overwhelm him. My dad didn’t necessarily help things because he had a lot of building and gardening skills and could butt in a little. Yet, I advised him to use my dad because his expertise was invaluable. Yet, my husband did not want to learn from someone else. He said my dad made him feel stupid and inadequate. He painted the house one summer which was a good sign and it did look lovely. I thought maybe the completion of a successful job might motivate him to do more, but this didn’t happen. Instead he started a new business, in antiques and collectibles and while the house sat needing maintenance he would sit in his office scouring auction catalogues and trawling ebay. He had no experience in the area so we talked about my friend Nigel, who had 50 years of experience, mentoring him and taking him to a few auctions. He refused the help and kept going to auctions until his office was full and the stuff was starting to spill into the hallway. During this time he was claiming carer’s allowance for me, but wasn’t enjoying it. I thought it might be better for our relationship if he gave up the caring role and went back to work. Then we would have the money to pay for some care and he would be free. He agreed he didn’t want to do the care, but he still wanted to claim the carer’s allowance and run his home business, which as yet was bringing in no money. I pointed out that claiming the allowance but doing nothing was just as bad as the fraudulent claimants he moaned about. He saw it as claiming back all the tax he’d paid over the years. I thought the benefit should be free for someone else to claim and he could work because being at home seemed to depress him and if he wasn’t going to do the maintenance around the house then we needed to pay someone to do that. The argument went on till 3am and he said being with me was just too hard.

The marriage muddled on for a few more months, but then I started to have panic attacks. I had been trying to do a PhD, but finding it quite stressful alongside everything I was doing at home. He told me that they’d only given me a place because I had the money to pay and it was simply getting ‘paying bums on seats’. I started to lose my confidence and he told me he thought I couldn’t keep it up with my commitments at home. I gave it up and found myself feeling depressed and without focus. I visited my GP in tears and she recommended anti-depressants and therapy. I had both but during the whole experience I never once mentioned how things were at home. I was too scared to say I’d failed, that I’d made another mistake and that maybe the people who warned me off had been right.  I also loved my stepsons and couldn’t imagine a life other than the one we’d created. As time went on though, through our final summer, I started to go to bed early on my own and pray for peace and quiet in my life. I longed to go to bed alone, with my dog and not have anyone sharing the room with me. It had now got so bad I didn’t care anymore.

I kept saying to me ‘if someone loves me why would they do this or say this?’ This must have gone through my head a thousand times in the last year we were together and it took me that long to wake up and notice what I was saying. He did it because he didn’t love me. Love is ability or a reflex action; it is not what you say it is what you do. Everything he was doing made it very clear that he didn’t love me and this worked as a release for me. I didn’t have to try, or strive anymore to make the relationship work because I’d done everything I could.

The Hospital Experience

I am currently in hospital and desperately wish I was at home. I have found out over years of hospital admissions that the more I feel the need to stay the quicker the NHS want to kick me out; conversely the better I feel the more the NHS wants to keep me. This time is one of the latter times. I want to go home, but I seem to be staying here indefinitely. Officially I am awaiting an MRI scan and, as was pointed out to me the other day, unless I can stand unaided I am going nowhere. Hospital is always a world of contradiction for those of us with invisible disabilities and it is precisely because of the issues to do with this and the general cock-up that my life has been I ended up here. I did not maintain my recovery baseline.

Firstly, I couldn’t decide what to do with my GP. I have moved about 5cm out of my surgery area, but with a current Atos assessment pending and two upcoming hospital appointments I was being careful about when I made the change. I felt my Atos assessment needed back-up from a GP who had known me for a period of time, and that my new referral to the rehabilitation team was so important I didn’t want to lose it between GP surgeries. So, for a couple of weeks I told a little white lie and neglected to tell them I’d moved. I was also aware that I was going on holiday so needed a letter from my GP so that I could travel with my meds and also to say I was fit to fly; the two contradict each other completely but she did it anyway. I went to New York, came home for a week and then went to Northumberland. Sadly for me I got found out. Just before travelling to Northumberland I had a pain treatment and changed my address at the hospital, forgetting that a discharge email would be sent to my GP. I spent a lovely week away and came home to a letter saying I had 7 days to find a new GP; those 7 days were now up.

The second stupid thing I did was ignore the signs of a water infection. I had a bit of an inkling I might have a problem but tried the old cystitis sachets and assumed it would just go away. I flushed it out with cranberry juice while away because in the US I can get cranberry capsules with antibiotics from the pharmacy. It didn’t improve but didn’t bother me too much either. I didn’t really drink enough in retrospect and had been feeling slightly dehydrated for weeks. Also while wandering round all day it wasn’t always possible to go to the loo immediately and holding it in is the worst thing I can do. When I returned I didn’t go to the GP immediately because I was so busy trying to fit in work and home stuff before going away again. While friends and family rolled their eyes over my priorities I was enjoying myself. I did have a great time on my holidays, both of them, but with the benefit of hindsight I shouldn’t have gone on the second one. I was tired already and the late moving date I’d had meant that there were simply too many commitments in too short a space of time.

Then the weekend I got back it all went wrong. I was walking out to my car when my back simply gave out. I leaned in and put my handbag down, moved to get back up and that was it. The pain was sudden and like the worst cramp you can imagine. I tried to drop into my car seat but I couldn’t drop, I tried to stand up straight and I couldn’t and worst of all I couldn’t walk. After standing like a bloody statue for 30 minutes I had to brave the pain and get moving. So I walked into the house like I’d just got off a horse and I rang my parents. I couldn’t even lie down without help and once down I couldn’t move up again. I spent 24 hours like this until my friend M decided enough was enough and a GP needed to come out. We rang my old GP and he told us I was no longer on the list, so we rang 111. What a waste of time. It took 45 minutes, and being cut off twice, to be given the number of my own GP who had already refused to come out.  They then gave me an alternative number, for another GP who didn’t even cover my area. Now getting desperate, my friend rang a local surgery out of the phone book and explained. I don’t think we can do anything, but we’ll ring you back she was promised. An hour later she gave up on the lot of them and rang 999. Morphine and relief arrived within 20 minutes.

The difficulty of going into hospital is working out whether this is my ongoing condition or whether it is something completely new. After my GP had removed the question mark from my MS diagnosis earlier in the year and my steroid treatment in the same hospital in April I felt fairly confident telling them I’d had MS for 18 years, but didn’t know whether this was a relapse or not. I was admitted and treated with diazepam and morphine and the medical team decided that it was probably a relapse as I hadn’t been carrying, bending or doing anything athletic. They also decided I had a kidney infection, which wasn’t really a surprise considering how long I’d been ignoring the niggling symptoms. A few days later they diagnosed a resistant bug that needed a very specific antibiotic, but in the meantime they wanted a neurological consult before prescribing steroids again.

I’ve not had very good relationships with neurologists but the most recent one I’ve had was the best so far. I was diagnosed as having MS in 1995, by a medical consultant who had consulted with neuros in Sheffield. Lincoln didn’t have its own neuro clinic then and it was the way everyone was diagnosed. I soon found out how to manage stuff like disability aids, money to live on and groups to join with very little help from the medical profession. I didn’t see a neuro again until 5 years later when the new MS drugs were coming in and everyone was being re-assessed for their suitability for interferon trials. This was my undoing. The next neuro I saw seemed determined from the outset to completely overturn my diagnosis and remove me from his list. He passed me from allergist, to haematologist, to rheumatologist for anything that would explain my symptoms and it threw up a few other things – Hughes Syndrome and the possibility of a connective tissue disease, but no big catch all syndrome that would fully explain everything that was going on. I was passed back to neurology where he rather grudgingly admitted maybe it was MS, but in a very benign form that wouldn’t cause much of a problem. Maybe to his mind, it wasn’t much of a problem, but from my perspective as a once healthy and active 23 year old, having spells of being unable to walk, sleeping round the clock and experiencing extreme pain on a daily basis, was hardly problem free. I guess he had more perspective than me and saw the worst primary progressive cases of MS. However, I still found him dismissive and a dangerous idea started to take root in my mind; what if this was all in my head?

Several years and neurologists later I have been no further forward on the diagnosis front until very recently when it seemed to have been accepted that after this many years of a relapsing remitting pattern there was nothing else it could be. I was happy and comfortable with this and since my treatment at the pain clinic and the addition of Bowen therapy I was actually more active than I’d been in years. This relapse was not unexpected considering my activity level and the amount of stress I was under. The neurologist came onto the ward two days after I arrived, and I overheard a conversation with the medical consultant where she said ‘I have no reason to disbelieve her’. My anxiety started immediately and wasn’t helped when he came into my curtain and started the conversation with ‘I am not saying you are lying but…’ There are times when I really wish I could react in the moment. I am one of those people who think of the witty retort several hours later, or sit on her anger until three days later when expressing it is inappropriate. I would love to be able to think express an emotion when I feel it, but my first reaction seems to be curling up inside myself and thinking later. This is an extremely rude way of starting any conversation in retrospect, but it wasn’t until relaying the conversation to the medical consultant later that day when I felt able to complain about his manner. Accusing someone with an invisible disability of being less than truthful hits them where it hurts the most. There have been times where I have doubted my own symptoms, wondering whether if I just tried a bit harder, or rested a bit more, or ignored the pain it would just go away. Even during my counsellor training there have been times when I’ve thought ‘what if this is just a somatic ailment’; the bodies’ way of turning an unacceptable mental illness into a more acceptable physical ailment. However, I keep coming back to the same place – if I can’t walk or am suffering extreme pain it doesn’t really matter what’s causing it, just treat the symptoms. This type of dealing with patients seems peculiar to neurology where all symptoms are questioned and tested before they are accepted. Yet, there is still no one simple test for MS. An MRI scan is indicative but not conclusive; a lumbar puncture can pinpoint certain anti-bodies but is not conclusive. It would seem that many people diagnosed before the advent of the MRI scanner were diagnosed with MS via symptoms and have never had that diagnosis questioned since.

My diagnosis, and that of my peers diagnosed around the same time, seems to be constantly scrutinised and measured. Some were dismissed as ‘too far gone’ for interferon treatment, while others were seen as too well or benign to bother with. The criteria for interferon was so narrow as to be ridiculous and the issues of cost and effectiveness weighed heavily into the argument. A neurologist I had been using at Hull was much more effective in the way he treated me, although the outcome was the same. He was a lesson in how semantics and a bit of compassion can change everything. After conducting a battery of tests the first thing he said was ‘I believe you’ and he accepted that clearly there was something serious happening that affected my life enormously. He said that neurology does not have the answers to everything, and that there are clearly more things out there than they know about. So, he wasn’t sure what was going on either, but at least he believed me and understood that, for me, this was a big deal.

The new guy made me feel immediately guilty and ashamed of myself. I felt like I was wasting his time, and that maybe I was ‘putting it on’. I lost all of my fight in an instant and felt like a fraud. I hope that by the time I’ve had my MRI scan and he returns my fight will return also. I want to say that it was not my fault or my idea to diagnose this disease. I did not pluck it out of thin air. A doctor in a hospital diagnosed me and I did not have any reason to suspect he was wrong. My whole life has been rebuilt on this premise of a diagnosis – it affects everything I do, from work to life insurance, to getting a mortgage. All of these things are more difficult because once, a doctor decided I had MS and it is now on my records. If this diagnosis is now completely overturned with no idea of what has replaced it, who do I become? I still have all the problems, but no rehabilitation team to support me, no specialist nurse, a reduction in entitlement to benefits and the expectations I might go back to work. Doctors have no understanding of the psychological effects of a disability or long term illness. This is one of the reasons I am training as a counsellor and psychotherapist and hope to help people in this same position.

In order to overcome the shock of being diagnosed with a long term condition it is sometimes necessary to identify with a new group of people because it can be impossible to fully integrate back

into your old circle of friends. I found friends who were so shocked by my diagnosis they struggled to talk to me. The old things we used to do together as young people in our twenties, dancing and clubbing, drinking, going to work at my local newspaper, became difficult. I couldn’t drink as much because of the medication, I couldn’t go out clubbing because all of my rhythm and balance had gone and I had become the person who sat watching everyone else’s drinks and handbags. I had started to struggle to stay awake beyond 11pm and felt like a complete killjoy. A lot of friends did remain loyal but mistakes were made in how I was treated; I was not invited to hen nights on the premise that I would not be able to get on the mini-bus. I started to become that static person on a night out who everyone tells their problems too while all my friends were getting chatted up. So, because I no longer fitted in my old circle I created a new circle.

I became part of a sub-culture to use proper sociological terms. We have our own rules, hierarchies and moral compass. We have our own jokes and a gallows sense of humour about our disability. Without this subculture I would have been lost and never known how to cope with not working, not being able to have children or the breakdown of my marriage as my symptoms worsened. These people understood those experiences and taught me to live a new life, within limits, but still as funny and exciting as the one I’d left behind. I had found people to identify with and got used to my new disability identity. What doctors do not realise is that when someone has overcome the psychological curve ball they’ve been thrown and built a new life for the last 18 years, to take it away again is a wrench. It leaves me belonging nowhere – some weird no-man’s land where I can’t compete on able-bodied terms and the sub-culture no longer wants me because I am a fraud. Labels may not seem important, but they are. It is my label that gets me my benefits, my blue badge and my help to get through university. Without a label I would still need all these things, but would find it twice as hard to get them. What it does is make my life harder than it already is.

New York 2 - The Return

This is the story of how two women with Multiple Sclerosis managed to spend a week in New York. New York is like standing in a fairy tale for me, because I have listened to all the songs, read every book and watched all those film and TV series where New York is as much a character as the people. I am a huge Woody Allen fan thanks to my mum so watching films like Manhattan and Play it Again Sam inspired me to love this, probably very elite, representation of the city where people had wonderful apartments filled with books and met each other at all of the New York landmarks. I wanted to see Central Park where Woody Allen apparently waved to Mia Farrow in her own apartment across the way. I wanted to see the huge Christmas tree at Rockerfeller Plaza where there was an outdoor skating rink. I wanted to see Greenwich Village where those six ‘Friends’ hung out, drank coffee and ate pizza. I wanted to go to Deli’s like the one in that scene in my favourite film of all time ‘When Harry met Sally’. I also wanted to go to a Russian restaurant like the one in Sex and the City where Carrie goes for her first date with Aleksander Petrovsky and he introduces her to Russian tea sweetened by black cherries. I wanted to see the fountains where Cher meets Nick Cage outside the Metropolitan Opera in Moonstruck. Every week I watched Seinfeld, Law and Order, CSI: NY and imagined one day seeing the New York skyline all lit up at night. For years I never imagined I’d go, especially once the MS came into my life. I thought I’d never have the money and having spent the first year after diagnosis in and out of hospital three long times I couldn’t imagine anyone would employ me. In fact it was the loss of my husband that left me more financially secure and able to start thinking about travel; in order to remember him and let him know I got there both times I have lit him a candle in St. Patrick’s Cathedral. I was 37 years old before I even applied for a passport, way behind most of my peers who had been travelling abroad at school even. It says something about my love affair with New York that it was the first place I wanted to go to and when the opportunity came up again I was all for it.

So, how do two MSers get to New York? I guess the best answer is carefully and with a lot of planning. We did make the decision rather quickly. We had been planning on a trip for my 40^th birthday anyway; a weekend in Paris and I was expecting to go to Venice and Florence on the Orient Express with my husband in the October. I had never got round to booking, although I had been saving money for a little while. Then when the marriage suddenly fell apart in the September I realised it was not going to happen. I had found it hard to think about alternatives. I certainly didn’t want to replicate the trip this early after the break up because it would have felt weird at that point to go somewhere so romantic with a friend. We were still thinking about Paris though or maybe Venice in Carnival the year after. Then we saw that Monkey: Journey to the West was on for a week at Lincoln Center in New York. My friend and I loved the opera when we saw it a few years ago in London. I am a huge Damon Albarn fan and think he’s a musical genius; over the years I have seen Blur, Gorillaz, Monkey and his latest opera Dr.Dee. Combined with the animation of Jamie Hewlett, acrobatics, martial arts and dance Monkey is like nothing else I’ve ever seen. The thought of seeing this in New York with the great food and atmosphere, all of those galleries and museums I couldn’t resist and we were booked into The Library Hotel within 24 hours. The hotel was a boutique hotel with a different subject on each floor; as soon as we saw their logo, a monkey in spectacles reading a book, we knew it would be our sort of place. Then the real organising began of how we would comfortably get to the airport, by train or by car, and if by train how did we get from King’s Cross to Heathrow with that entire luggage. I am rubbish with details and need nagging to get all this sort of planning done. Luckily, my friend is good at this sort of thing and we gradually had a train to King’s Cross with disabled assistance, a car to Heathrow and then assistance at Heathrow. Advised by our physiotherapist to take a crutch each as a ‘visual cue’ I did not want to. I hate having to use the bloody things anyway so really balked at the idea of taking one when I didn’t feel I needed it. Yet, I realised not far in that I really did need it. People do not understand an invisible disability and the change in people’s attitudes towards us was amazing. There were no questioning looks and no hesitation in offering assistance; one man even taking up our luggage at Peterborough and putting it all on the train, even though he had his own train to catch. There was one young man, he was reading the True Blood series so I should have known he was ok, who got up and carried our luggage off the train to meet our assistance when it wasn’t even his stop.

However, there is nothing more scary then travelling for 14 hours to reach a wet 87F New York City at 10.30pm and being told you have no hotel room. The hotel said we had made a mistake with the booking and at first I didn’t dispute this, because I have been struggling with cognitive problems for some time now. There are those studies where a number cruncher works out how much time per year the average person spends in bed or sits on the toilet. I could beat both of these totals put together with the cumulative amount of time I spend hovering in doorways, wondering why I came up here in the first place and what on earth I am looking for. My fellow MS friends are now getting quite used to 3am texts that say things like ‘I remembered the name of that actor. It was…’ or even ‘I left an entire bag of groceries in your kitchen’. I can even be woken suddenly by that answer I missed on Pointless that was just on the tip of my tongue but would never come. It has been called MS fog or Fibro fog for those with fibromyalgia, but I also blame the myriad medications I take to shut off pain signals, particularly the phenytoin infusions which leave me unsure of who I am for 24 hours! It seemed to use entirely plausible that we’d cocked up in this way, but as it turned out it wasn’t us at all. It occurred to us in the middle of the night that if our booking had been made for 2014 as they said, why had they been looking at it at all in 2013? We checked it out on the trusty iPhone and we were right. There is nothing like a contrite New Yorker in the service industry. They go all out to correct mistakes and once it had been pointed out they did rectify the mistake and then some; a balcony bedroom in a different hotel, with wine and chocolates, a free night’s accommodation and an apology in writing. We were perfectly happy, but the hotel staff was mortified, and made it their business to make sure we were happy and satisfied with everything about their city.

So, the first obstacle is simply getting around, especially in the heat of summer and there were occasions where we both pushed our pain and fatigue limits by trying to walk too far. However, once I’d got the knack of securing a cab we were sorted. I was chief taxi grabber by the end of the week, and it was the only practical option despite the financial outlay. In the heat we discounted the subway immediately because it was stuffy and airless, plus underground trains give me terrible motion sickness (never a good look). Walking wasn’t such a pain, because we could set our own pace and everywhere there were little churches or gardens we could wander off and explore. It gave us opportunities to sit somewhere cool and shady and rest our legs for a while. Of course there were days when we went  a bit too far, especially in the large galleries or museums where the wonder of what I was seeing often meant we stood too long or didn’t take meds on time. There was always a park to sit down in as well – Central Park is great for shady areas to sit and read for a while and there were plenty of vendors with ice cold water to make things more comfortable. Madison Square Park was great for people watching and checking out the dog park while we missed our own pooches. We also made sure that at some point in the day we stopped to eat properly and always took advantage of the great breakfast in the hotel so we were set up for the day. Planning breaks into the day became something we did naturally so we barely noticed. Then when too tired or when we knew that it was just plain stupid to attempt the distance we jumped in a cab and not only rested our legs, but got a blast of much needed air conditioning!

Pacing also applied to when we would eat during the day and also just how long those days were. We were careful about exactly how long we were up and out all week and there were only a couple of days where I thought we’d stretched it. Knowing our own fatigue levels we knew that long days and nights out on the town were not going to be the order of the day, nor was drinking huge amounts of alcohol. Staying at the hotel for breakfast meant we started the day gently, but we also never stayed out too late either. If we knew we were going to be out at night, we would make a pit stop back to the hotel for a sleep in the afternoon. We had to accept that we were not going to see it all and there were some things we were just going to have to give up on because of the length of queues and standing time. We did eat out on some nights, including the beautiful Russian Tea Room with its smoky tea sweetened with black cherries, but tried to get in around 10 ‘clock. Although we knew we couldn’t drink much we did try some cocktails here and there, but were sensible enough to know that one or two was the limit. After too many Cosmonauts at the Russian Tea Room I managed to send the cab driver to the initial hotel we’d stayed in instead of the new one; we were giggling like loons but he let us know just how pissed off he was by not braking for corners! We had also tried alcohol on the plane over which was a stupid decision. The mix of alcohol and medication led to me eating my in-flight ‘meal’ in the manner of a T-Rex with his teeny tiny arms. We then made the observation it would be awful to be married to a T-Rex because you would always be the one who changed the quilt cover. We decided that the only possible match would be a huge gibbon. We proceeded to cry with laughter and in retrospect it’s a wonder they let us in the country.

One of the big decisions we made early on was the need for assistance and this was a huge one for me because I hate having assistance. I am very independent and hate anyone else doing anything for me. I often don’t admit when I’m feeling ill, or when I’m struggling with life and need support. I like to just suck it up and do it all myself. I have realised in the last year that this has become a self-defeating attitude and have been taking steps to change. I will ask for help more and say when I need some company instead of being miserable alone. This openness has been difficult for me, but has had its rewards; other people are more open with me and find me more approachable instead of ‘scarily efficient’ as I was once called at work. My need for independence has looked like aloofness or being stand-offish and that was never my intention. Yet, asking for physical help was still a big step for me. I would probably have struggled and been fatigued, but once persuaded I was looking forward to the idea of someone else doing the hard work. Relapsing-remitting MS is weird because sometimes you look like you don’t need help and sometimes you don’t feel like you do, but the knock-on effect of struggling is days of pain and fatigue which is the last thing you need on holiday. I knew this, yet getting into a wheelchair to conserve energy still felt like an alien concept. There is something deep within me that says ‘if you can walk, you should walk’. Yet, I remembered other journeys where I had walked and then felt sick with pain while queuing at customs. It was the sensible decision but gave me a completely different perspective on the world around me. There is a certain amount of independence that you give up – sometimes I felt like a parcel being delivered from one place to the next without any concept that I was a person. Ground staff at Heathrow and JFK were brilliant, but at Newark we were treated like luggage, despite trying to make conversation with staff who were helping us we were largely ignored while they carried on their own conversations and even phone calls while wheeling us around. I couldn’t decide to just take a browse in duty free or wander off to the loo when I felt like it because I had to ask. The need for help reasserted itself when we visited the Empire State Building and were told ‘you don’t look like anything is wrong with you ma’am’ and we educated them in the concept that not all disabilities are visible (along with a few other choice words from me in my best ‘haughty Englishwoman’ voice). I am glad we took help because it made the holiday easier and stopped either of us developing problems while we were out there. Of course we’re paying for our shenanigans now we’re back home, but we did it and we had the greatest time.

So, I did see Greenwich Village where those Friends hung out and took photos of the apartments, little churches, restaurants and boutique shops. We went to Lincoln Center for Monkey: Journey to the West and I got to stand by the fountain from Moonstruck and wait for the it to shoot up into the night sky. I had my tea (and one too many cocktails) at the Russian Tea Room and went to Central Park and explored all the different landmarks I remembered so well from my films. Yet, we saw things that we loved that weren't from the list too. We got a free breakfast at the Brooklyn Diner and a lovely hug from the owner, because he lost our order. We explored little shops with some of the most beautiful window displays I have ever seen. We sat people watching in parks and got to see how New Yorkers use their city to walk their dogs, to do Tai Chi in the open air, to sleep under a tree as the fierce mid afternoon sun got a little too hot. We experienced shopping on a Saturday

 

New York No 1 - We Made It There (But It Wasn't Easy)

 

They say if you can make it there, you'll make it anywhere. I won't say New York beat me, but I did start to feel a little like Jack Lemmon in The Out-of-Towners. I was running around in the rain with a soggy piece of paper, writing down everyone's name so I could complain effectively. As I wrote to my mum after 24 hours I was half expecting to end up sleeping under a tree in Central Park and having my shoes stolen in the middle of the night by a man in a cape.

 

I put the pictures of my New York trip on Facebook and enjoyed all of the comments from friends and family, hoping I’d enjoyed my trip and telling me how well I look. We had a great time, me and my fellow MS partner in crime. I dubbed her the Ginger Mare after seeing it on the side of a horse lorry and she called me the Clumsy Pike Hound when I broke my fingers a couple of weeks ago. The trip was amazing and I saw so many things I thought I’d only see in films. The photos tell a story of museum visits, walks in Central Park, visiting a show and eating in great restaurants with plenty of cocktails, but these pictures don’t tell the whole story.

In general the picture of ourselves we present on Facebook is at worst a fabrication and at best a little bit of an edit. I react badly to people who use Facebook as a vent for all their complaints and misery, but maybe those people are just more honest. When they feel like shit they say it, but I rarely do. The most honest New York pictures on there are the ones where my friend shows off her blistered feet from walking on the insides of her heels, which she does to keep her balance. Incidentally I keep my balance from walking on the outsides which plays havoc with my knee and hip joints but you wouldn’t know that from a picture.

MS likes to remind you it exists from time to time. In April I had a sudden relapse where I suddenly fell asleep on the couch and became like a drained battery. I was vaguely aware people were there but they were distant and I couldn’t fully open my eyes to see them. I remember a doctor arriving and lifting my eyelids; I was aware he was there, but couldn’t focus on his features or reply to his questions. Once he dropped my lids again I had no ability to keep them open. I heard the ambulance man say that my pupils were not responding to light and I guessed that must be pretty serious. Gradually over the next few days the overwhelming fatigue lifted and as the IV steroids went in I began to see more clearly. It took a full week for me to return from hospital and longer to be able to stand and walk. This was a big relapse, as opposed to the little ones I was used to having from time to time. It was not surprising considering all the personal upheaval I was going through. I began to think that attempting all this training, alongside the divorce and house move was hard enough without throwing a trip to New York into the bargain. I expected to move in June and have a while to settle before going away but as it was there was only a fortnight before I was off on my travels.

Cancelling the holiday or at least postponing it would have been the sensible option, but this trip stood out to me like a beacon in a wasteland. If I let it go, I felt without something to aim for or look forward to. Just a summer getting the house straight and catching up on college reading. I felt it would be a definitive break from the norm. Having moved into a village that is literally a dead end means I have all the peace and quiet I could crave, so more of the same would not feel like a holiday. I needed to do something bold that would be the highlight of my summer and be my fortieth birthday treat to myself. It was a complete contrast to my ordinary day to day life.

In New York the noise starts early. I think I heard the first car horn at around 7am and then it continued all through the day, at varying decibels. There seems to be an unspoken code in the use of the car horn that was lost on me. Even police cars and ambulances don’t stick to one type of siren but alternate between them wildly. Added to that is the roar and rumble of the subway, planes overhead and the constant traffic. Then there is the shouting. I have never seen or heard so much shouting in public places. The smallest infraction seems to illicit hand signals and at one point a very audible ‘fuck you’ when bumped into by a jogger running across the pedestrian walkway. Everyone does everything on the run – people sleep in the park, on the steps of the public library and people make phone calls while walking and running between meetings and they often also descend into insults and shouting! It is exhilarating, refreshing and full of inspiration. People in New York simply do not notice you because you don’t exist. In the park there were people randomly doing yoga and tai chi by themselves and no one cared. There were women doing a boot camp training programme right next to a man painting the lake in front of him. I remember Billy Connolly once doing a routine about speed walkers and how ridiculous they look; he claimed it would never have originated in Glasgow where if someone were walking like that in the street they would soon be followed by a line of kids, shouting, pointing and taking the piss. It felt a little like that – there were people seriously doing things in public that would have been ridiculed here. Instead of finding that a charming English idiosyncrasy that keeps us all grounded, the thought made me a little sad. I felt an acceptance and tolerance there that I’d never seen in England. It could have just been the experience of being outside my own world and on holiday, but I didn’t feel like anyone gave a damn what I was doing – whether I walked with a stick or not, or whether I was dressed a bit weird (I do like to do that occasionally).

In some ways I guess it was the archetypal New York holiday, with lots of eating, drinking cocktails, going shopping and visiting the tourist attractions. On paper it looks like a huge adventure where we saw all the sights, met some interesting people, saw a great show and ate a lot, but the toll it took on my MS was invisible as usual. It was a feast for the eyes and the soul, but disturbed the body quite a lot. The arrival did not bode well when we were told we had no booking at the hotel we'd chosen; apparently we booked for 2014 not 2013. They let us have a room/cupboard for the night but neither of us slept well worrying about how we would handle finding a new hotel and organising our baggage the next day. Luckily for us it was the hotel's mistake not ours, so we were moved to a nicer hotel, with a balcony room and free wine and chocolates. Incidentally this story was a great one to tell in restaurants and delis because people were so appalled they generally offered us something free! We didn't use the advantage; well, not much anyway! The heat was unbelievable, thankfully we missed the temperatures close to 100F but we did see temperatures in the high eighties and this plays havoc with the nervous system. My fatigue was awful, leg spasm and pain increased and I would get sudden bouts of feeling like my chest was being squeezed (the MS hug apparently - didn't feel very friendly). To pace ourselves we would have a late breakfast and enjoy the hotel's air conditioning. Then we would venture to do one thing per day, or maybe two with a good rest break. We took our breaks under trees in Central Park or Madison Square Park. We drank plenty of water and even returned to the hotel for a lie down when necessary. Holidays with MS do require plenty of money - we needed to take cabs for longer distances, because the subway is not the most accessible system and buses were like ovens on wheels. I was very aware that I had started to take more painkillers and that each night I was fast asleep as soon as my head hit the pillow.

These are the things people don't see and having to explain the problem was a daily occurrence. I became a very haughty woman at the Empire State Building when we were sold expensive tickets we could not use because of our disability. 'Forgive me ma'am,' the manager said ' but I would not have known you had MS'. It seems that the image of someone in a wheelchair persists as the visible representation of our disease. Explaining why we couldn't stand in lines for long periods was difficult and we had to keep flashing our disabled railcards to show we were genuine. Luckily my friend's physiotherapist was well aware of this issue with MS patients and advised us to take a crutch instead of a folding stick because it was a better 'visual cue'. She was right. The crutch got us through the airports in VIP style and more room on the plane for free. It seems crazy I have to carry something I don't necessarily need to get the help I require, but actually it was easier than long winded explanations and constant misunderstandings. Our weirdest encounter was at the airport coming home where the lady checking us in with Virgin Atlantic said 'what have you done?' when looking at my crutch. 'I haven't done anything, I use it from time to time because I have MS', I replied. 'How long for?' she asked. 'Fifteen years' I said, looking at my friend for confirmation. The woman pulled a face as if this was the most terrible fate she could think of. 'I'm so sorry' she said to my friend. So we gave her our stock reply 'Don't apologise; you didn't give us it'. She seemed confused by this and very distressed by our situation and we were very glad to be transferred then to a more upbeat rep who gave us free extra leg room and didn't bat an eyelid about two ladies with matching crutches.

This confusion seemed to bleed into a lot of the interactions we had over there. Our missing room booking was stressful and inconvenient, but the next day sat reading on our balcony we were able to forget the inconvenience and feel we'd landed on our feet. When my friend's iPhone was stolen in the public library the hotel staff seemed to feel it was a disaster they were personally responsible for. We told them, 'it is what it is' and once the insurance and reporting was sorted out we put it behind us and went to the museum followed by a lovely dinner at the Russian Tea Room. These problems were not tragedies; they were just some of life's little glitches and inconveniences. Letting one or two experiences overshadow the whole holiday would have been wasteful and self-defeating. We got through it okay and although I will be paying for my adventures in fatigue for the next week or so, it was all worth it.

 

A Resting Place

So I am here. After many months of wrangling, worrying and wondering if it would ever happen I have finally moved house. The last three and a half months have been nothing but activity – from the basic but gargantuan task of packing up a four bedroom house, to the endless legal appointments, and the downsizing. I have held sales, sold things on ebay and given away whatever was left to friends and charity.

Moving in was equally exciting, physically exhausting but positive. I could go and buy a new kettle or choose pictures for the walls. I laid awake some nights full of equal parts excitement and worry – one minute I would imagine the deal falling through at the last minute and the next I would think of where I would put my writing bureau. I didn’t have a full night’s sleep in the final week and the worry stopped me doing the basic things that help me stay balanced physically and mentally. I simply didn’t have time to walk the dog, or eat properly or get my prescription in on time. There were nights I went without the right tablets so popped up like an excited meerkat at 3am. Other nights I couldn’t get to sleep till I took diazepam and then felt groggy and out of touch all the next morning. Every nerve in my body was on tenterhooks and I kept saying to myself ‘when I get in the new house..’ after listing everything I needed to do better. I was hard on myself of course because I always am. Really I was only doing my best.

Then I got here and it was like a weight lifted from my shoulders. Of course lack of sleep and over excitement meant I broke my fingers dropping a picture in the first ten minutes I was there. It is quiet here. Not literally as quiet as my old house where I had no neighbours but there is a tangible calm. It is like going to Cornwall where the pace of life seems slower. Coming home is like going on holiday. It has changed some of my habits too. Instead of switching on TV at any old time and watching any rubbish that’s on, I think more about what I want to watch and only switch it on then. I listen to more radio and music, because I am cosier and in a much smaller house so a CD on in the sitting room is easily heard when I’m in the bath. I didn’t put a TV in my bedroom and I have internet access upstairs so when I am watching TV I really watch it, instead of watching with one eye and playing Bejewelled Blitz with the other. I think I have been working on overload for so long it was no wonder I recently relapsed in the spectacular way I did. Yes, sometimes these things just happen, but other times it is easy to see where I have made life difficult for myself. This time the divorce, the house move and all of those things were unavoidable, but the way I dealt with them wasn’t always helping. It is often easier to overload the brain with technology and sound rather than listen to your thoughts. It is hard to motivate yourself to cook good healthy meals for one or to get up and exercise every day.

I am hoping the quiet and shelter of my new home will be beneficial to me physically and mentally. It will give me the space to get over the changes in my life, but also foster a new way of living my life. Just so my friends don’t think I’m getting too zen and out of character I am having the excitement of New York City for a week’s holiday. Well, you can’t be quiet all the time can you?