Pain Clinic Antics

Sometimes the NHS can be very frustrating. I hate to complain about an institution I depend on so heavily and believe in so strongly, but today I felt like a drain on the system and this time it wasn't my fault!

A couple of months ago I had some injections in my spine; 7 around my neck and 6 in my lower back on the right hand side. These injections comprised of cortizone and local anaesthetic make the rigid muscle relax, breaking the pattern of pain messages to the brain which then stops the need for the muscle to contract. This process of spasm and pain is a vicious circle that endlessly repeats causing chronic pain. I had my injections in May and after a few days recovery I found them really effective and felt almost normal.

Then a few weeks later I started to get muscle spasm in my back but this time on the left side. It was excruciating. Every time I moved it would grip me round the middle. Like someone giving me an inappropriate hug - right round my pelvis with a tazer! It was so bad after a couple of days I gave in and asked for help. Ringing the ward where I had my treatment was supposed to be the first port of call, but as I had found out in the past their advice ranges from ring an ambulance, to call your GP with an unspoken undertone of 'for god's sake don't come back here because we don't know what we're doing'. This time I got 'ring your GP' so I did that. My GP is great, she really listens and after a half hour on the phone we came to the conclusion that my discs weren't caving in and the priority was to get the pain controlled. She prescribed something called Acupan which is another nerve blocking painkiller like the other two I have. So someone went to fetch it for me and after 24 hours I was a lot more comfortable. The other thing she advised was to call the pain clinic just to ask if this was a normal reaction. It seemed obvious that it would be but still I made the call to the pain secretary and this is where the NHS became ridiculous.

The pain clinic secretaries work on a job share basis and not your common and garden job share; instead of simply sharing the work and communicating with each other they decided to split roles. So, one works in the morning but solely on sending letters out and the other works in the afternoon solely on making appointments. Its supposed to work like his: you telephone in the afternoon and get the appointments girl, she then makes you an appointment either in clinic or on the ward, she then emails the day's appointments to the morning girl, next morning secretary no 2 checks her emails and gets the appointments diary, she then sends out letters and information. It sort of sounds like it might work, but then you realise people don't slot neatly into morning or afternoon, or even into appointments and letters. If you ring in the morning to make an appointment woe betide you - you have to ring back in the afternoon if you can or rely on afternoon girl to check her emails and make you an appointment. Or you ring in the afternoon but can never get through because everyone has clocked the system and ring all at once. I confounded the system by managing to get through on appointments afternoon but by not wanting an appointment.

I explained that I wanted to ring for some advice and explained what had happened. The girl seemed completely baffled:

'So you want an appointment?' I explained again that I just needed some advice. I thought there must be some system of getting queries to the actual doctors.

'I don't want to waste their time with an appointment if its something simple'. I told her 'What if I ring within clinic hours? Can I get a message to a doctor then?'

'No, but I can give you an appointment', she said. She was tenacious. In the end I relented because I thought if I had a fast track appointment it would be all done and sorted for my new treatment appointment in September. I just had to keep taking the Acupan and hold on till then. The appointment came through a few days later and it was for two weeks before my ward appointment. I didn't know whether to keep it or wait, but experience told me that whether you were listened to on the ward depended very much on who was dishing out the treatment. If it was the pain consultant or his registrar that was good, but if one of the anaesthetists was subbing for them they had needles in you before they said hello!

Yesterday I went for my appointment and met with the registrar and more madness ensued.

'Why are we seeing you again? You were here in May' he said

'Yes I was on the ward in May then I had some problems so i rang for some advice and the secretary kept insisting I needed an appointment'. He turned back to my notes and rustled through a few pages. He showed me a discharge notice.

'You have seen this?' He was pointing at a line on the summary that said 'assessment and treatment'. I nodded.
'And you understand this?' he asked 'it means when you come to the ward you are assessed there not in clinic'.
'I get that, but two weeks after the treatment I was really struggling and I tried to ask for advice over the phone but that wasn't possible. She kept saying I needed an appointment'.

'Here it says to ring the ward', he pointed to another line on the page. I started to get a little bit cross.

'I understand you think I have wasted your time but have you ever tried ringing the ward? I have done it twice in the last four years only be told they couldn't do anything or didn't know what to do. Once I ended up as an emergency admission in hospital and this time they told me to ring my GP. As for assessment that depends very much which consultant you get. Some of them have a needle in you before you've had chance to tell them anything. An assessment to some consists of 'did it work' as they're setting up an IV and doing the actual treatment. They're not listening.'

The registrar put down his pen and turned to face me.

'You are never, ever wasting my time. It is no problem to me that you are here, but you have come a long way. I am worried that you are telling me these things but telling them to me makes no difference. I could tell the consultant now and he would make enquiries but nothing would happen, but if you from outside makes a complaint about these things then something is done. Make a complaint. This is not good enough'.

As he started to look at my back I was completely baffled by the whole experience. They have a problem with part of their service, and instead of keeping quiet and dealing it they now want me to complain about it? This problem has cost whatever the original treatment cost, then with GP time and the costs of a new drug for 6 months. It also cost ward time on the phone, admin time on the phone, then an appointment of at least 30 minutes with a consultant where I was told the following;

• the reaction you had was completely normal and could have been solved in a phone call

He examined my back anyway and concluded that no wonder I was in pain the left side of my spine is rigid! He then told me a long involved story about a dog, some fleas and a big stick which apparently was a metaphor explaining that the right side of my back is worse and caused greater pain so when it was resolved I then felt the lesser pain in my left side. He also checked out the trapezium muscle and decided that needs work too. In 30 minutes I talked myself into 20 spine injections for next time! I could have saved hundreds if not thousands if anyone in this chain had decided to do more than the minimum requirements of their job. They were all so focused on their little bit they were missing the bigger picture. 

After that it became my usual fun appointment. He was very reassuring about my pain, because sometimes its easy to think it's all in my head. He explained what my muscles were doing and seemed very positive about the results and since the injections had removed the right sided pain, it does seem likely. Then he seemed to scratch his elbow and it was bleeding. He then called a nurse and shouted that I had bitten him and needed first aid (don't think this is weird, this is normal for my clinic)! After he had first aid he reassured me that they would listen and have a proper assessment before the injections and would basically inject wherever I told them. Then he apologised for people wasting my time and handed me all my things, but wanted to keep my new tweed handbag because it was fabulous! Another day another appointment I guess.

Struggling with Dependency

Ever since my MS diagnosis in 1995 I have had to struggle with periods of dependence. My very first hospital stay when I received my diagnosis was for a fortnight and I arrived looking like I’d had a mild stroke. My notes read ‘Hayley is very keen on keeping her independence and has high standards of hygiene and appearance which she should be encouraged to continue’. It was strange to see someone assess and describe me in that way. I had always assumed everyone was concerned about their personal appearance and independence. I started to re-evaluate what I thought about me, but also about how I saw other people.

I have always submitted to different degrees of dependency when I needed to. I hate taking help in the bath or the shower but sometimes my illness has made it necessary. I’m not very good at being naked with other people in that context, probably because I am vulnerable and haven’t made the choice personally. Usually others have made the choice for me because of risk or I have been worn down enough by pain or stiffness to have to accept. It does not come easily and I would rather take a small risk here and there. This need for independence has led to falls: I fell in the bathroom and hit my head on a radiator, I fell down a flight of stairs and broke my collar bone and I fell when walking the dogs and dislocated my ankle.

The one thing that is very important to me is my driving. I am lucky to be using the Motability scheme so have a lovely car to zip around in. I grew up so far into the country that the only option was to drive or stay home. There was no public transport and it was too far to walk anywhere. It took me 3 tests to pass my test and I was never the most confident of drivers until I moved to Milton Keynes. This was a huge test of my driving ability because I was moving to the town of roundabouts from a market town that didn’t even have one when I passed my driving test. In order to get to university I had to take the M1 every morning and drivers were so aggressive. I soon grew in confidence and started to love driving. When I moved back to my home town we had a Kangoo which is a specially adapted van that my husband could wheel straight into. We explored all over, from Colchester to Ambleside to North Wales as we tried to cram a lot into his last years of life.

I knew I could never be without a car when a few years and one husband later we bought a huge Nissan truck as our joint vehicle. We were living in the country, at the top of a hill that would need four wheel drives through the winter. I gamely drove the truck for weeks having traded in my Toyota Yaris for it and being determined to master it. It was tough to park and get around the more medieval parts of town, but worse than that there were days when my husband used it and I was at home with no way of getting out and about. This may seem normal to some people who had this arrangement all the time, but for me it was hugely difficult. I had never been without a car sitting outside the house waiting to be used. My husband said I was spoiled and he was probably right, but I became miserable and depressed because I felt trapped. I don’t know whether it was a case of what I used to or a more psychological reaction to offset the trapped feeling my illness gave me. Eventually we caved in and I had a little second hand VW Beetle to potter in and now I have a new one on Motability because a little bit of money set aside helped I afford a down payment for the car I really wanted.

Lately I have been struggling with my driving. I can pop about locally quite easily on good days, but I have been noticing small changes. No matter how much I change my driving position it seems to impact on my right leg and lower back, I cannot drive at all when fatigued and certain medications make driving impossible. I have been building up to driving longer distances again and seem to have mastered the 60 mile round trip for my counselling supervision once a month. My other work is only 20 minutes away along with college so I am not being stretched as much as I might be. Then going on holiday came up.

It had been planned that we would have a family holiday in August in North Wales where we always went as children. We had a very successful holiday last November and decided we should try it again. It was assumed we would all arrive in separate cars so we could go our own way and do what we liked. Yet, as time drew nearer I had not had chance or a long enough period of good health to practice driving. A couple of weeks before I had driven to supervision as normal but then came home and slept for three hours in the afternoon. It seemed excessive for such a short drive but simply could not keep my eyes open. I was fighting my eyelids while trying to type up notes and kept experiencing double vision. One of my knees was very swollen and had been aggravated by the drive and I had pain from my lower back down to my right knee and through my heel. I chatted with a friend who was coming with us, a fellow MS patient, and although we had agreed to share the driving we were both worried about sustaining our concentration on the long 4 hour journey. We felt that if we drove there we would not be fit for a couple of days to do anything. My brother had spaces come up in his car so we agreed to pay for petrol if he drove.

For the last fortnight we talked ourselves into the idea because the cottage was at the edge of a seaside town so we could walk everywhere and only go further afield if invited by the others. We were taking a bag of sewing, sketchbooks and colouring books to keep us occupied as well as a fully charged and bolstered Kindle each. However, the journey still exhausted both of us being closer to six hours and a very warm day. We arrived feeling dehydrated and floppy. The holiday was good but I really felt the restriction of not having my own car. On previous holidays my friend and I would zip around little seaside villages and pubs or restaurants for tea. We didn’t always go out every day but at least could make our own choices. I was chafing badly at being dependent on someone else for a whole week. I realised how much I liked zipping around under my own steam. I decided when I wanted to leave the house; I decided where to go and when it was time to go home. Now we were both dependent on others to negotiate who was leaving and who would look after the dogs, or we would be dropped off somewhere for a few hours until we could be picked up. I love the holidays I have with my friends where we can go to the beach with the dog and then decide whether to have lunch somewhere or vegetate back at the cottage with a great book. Having very little say brought home to me how much I value my independence and what a huge loss it would be to me to lose my ability to drive.

This has been a good experience because it made me think about my priorities. I want to participate in the world and not be hidden away all the time so I have to prioritise and make this possible into the future. I have to think about what I need to make this happen. It made me realise I need to focus my money on experiences rather than things so that’s a change I need to make in my spending habits. When I am asked by the rehab team what I need from them, I have to ask for what I need to access my favourite things like the theatre, galleries, and concerts. I need to use my wheelchair more and book assistance every time I go somewhere further afield whereas now I might just go for it and hope I cope. I need to accept that I am at that stage of my illness where my life will change again but that does not always have to be bad. I need to employ the state of mind that my late husband Jez had – instead of looking at a wheelchair as giving in he saw it as a tool to make him more independent. I need to stop thinking that I’m giving in and accept that I am carrying on – whatever it takes to get there

A Crip Trip to London - Part 2

I used to be a huge fan of the show Kids from Fame. I had the albums and the legwarmers! I used to pirouette around the house with all the grace of an elephant imaging myself winning a place at the New York School for Performing Arts. There was a line at the beginning of the song Fame spoken by dance teacher Lydia played by Debbie Allen that said something along the lines of 'this is where you start paying in sweat'. Well I got back from my trip to London two days ago and I'm paying in pretty much the same way.

I have several medications now that I have to be very careful with. I have a controlled release morphine drug, a pre-gablin 300mg, and amitriptyline. If I miss my amitriptyline I don't sleep at all. If I miss pre-gablin it only takes about 2-3 hours for the black dog to descend and everything that looked rosy when I first woke up soon looks bleak and difficult. If I start sweating the culprit is usually morphine; either I have taken it later than the 12 hour window or I have taken too much. As far as I am aware I have taken everything on time, even when in London, so it seems unlikely but I have certainly been sweating. It only takes the slightest thing to set me off when this starts happening. Usually I take the meds and then until the next dose puts me back on course I start to feel sick, and then the sweating starts. I get hot and the heat whooshes from my chest right up my face into my scalp. Then the roots of my hair prickle and start to get damp. This feels weird because I become aware of cold air around my head as my scalp sizzles. Then the hair at the nape of my neck becomes wet and then slowly drips down to my shoulders. It pisses me off because my hair starts to curl weirdly and looks all damp at the ends. My face is usually red and I have to sit down until I cool. All I can do is drink water, sit in the shade or indoors, fan myself and wait for it to pass.

The lobby of the V and A

The first sweat started at the V and A on Wednesday. We were booked in for two exhibitions: Italian Fashion in the morning and Wedding Dresses in the afternoon. In between we went for lunch at the cafe, but as we stepped through the doors the temperature was ridiculous. I couldn't understand how people were eating in the heat - inexplicably some were eating soup!! Outside seemed even worse. Sunshine everywhere and not a square foot of grass free to sit in. We decided on indoors in the coolest corner we could find and I bought a cool can of coke with my lunch just to put on the nape of my neck. It worked but all afternoon I could feel the sweating creeping up on me again unless I sat down from time to time. This was difficult because there was nowhere to sit in the whole of the downstairs section apart from a two foot long bench in front of a film of royal weddings that was constantly occupied by OAPs who were not going to give a seat to a fairly healthy looking, but sweaty, 40 year old woman. Upstairs we had better luck, but all the way through shopping I could feel my hair dripping and I was desperate to go back to the hotel and get a shower. I felt completely grubby. That night all we could do was get a cool shower, put clean PJs on and go straight to bed. I was asleep by 9pm and only woke at 11pm to take my tablets.

On Thursday we visited the National Gallery to see the Virginia Woolf exhibition which I loved. We browsed the shop and then decided to spend the rest of our day at Liberty's before returning to the station for our 6pm train. Thinking Liberty's was only a short walk from the NPG we set off working on the side of the road in shade, through Leicester Square and through some back streets over to Carnaby Street and in the back entrance of the store. This turned out to be further than we remembered, with a lot of sunshine and my feet seemed to be swelling all the time. I was so tired I was tripping on kerbs and cobblestones. I could feel the ankle strap on my shoe digging in but we kept going. At the store we headed straight for the cafe and spent some time enjoying their pink lemonade and having a cheese board. I felt a little recovered from the walk, but had the same feeling of damp hair. I didn't dare touch it because I knew from experience that only made things worse. After a little spree in the haberdashery we got a taxi back to the hotel and on to the station. Usually we book assistance for trips and report to the information desk to have our bags carried and a porter see us on to the train before anyone else. This may seem a little bit precious but people have no scruples when running for a train and having been trampled before I know my limits. This time though, for some daft reason, we hadn't bothered. We'd booked the tickets in a bit of a hurry because there was a really cheap fare on a website and we wanted to take advantage. As the booking went on there was no place to ask for assistance and I thought we could maybe ring after the fact but it didn't happen. We were on our own.

Tea at The Sanderson

Sometimes, using a bit of charm and flashing a disabled railcard can get them to tell you which platform the train will be going from so you can get there early. For some reason they were messing with the platforms and he couldn't tell us. We sat in some chairs and had forty winks and then went back. They only gave us 3 minutes notice to get to the train and not being able to run we were struggling to even catch the train, never mind get there early. We realised that if we didn't get on the train we would be left behind so we jumped on where we were, struggling with our luggage and decided to get to our reserved seats on board. After travelling through coach F the train began to move sending me onto a strange man's lap (this is better than the time I sat on a man's head - see other blogs). We were meant to be in coach B and passed an uncomfortable time dragging our cases behind us in a packed and sweaty train for several more carriages. It was so hot that the sweating began again, both the normal stuff and the new, horrible kind and my hair was wet. Then we reached coach C just as the guard announced that they were sorry but the air conditioning had broken down in C and they would be giving out free water. This meant that every other carriage was packed full and that someone would be in our seats. We finally reached them and negotiated with the people in them. I had found a few square inches of space in the luggage rack for my case and abandoned it a carriage away. Sadly Mandy's ( the bigger one) was still with us and we had to lift it into the overhead rack that took a lot of effort and muscle strength. With spaghetti arms we wedged ourselves into our seats and I fell asleep again.

Three hours later we were letting ourselves into Mandy's flat. I felt exhausted and grubby because I'd been wet through several times and had dried again. My legs and feet were throbbing and I had no strength at all in my arms. I took off my shoes and noticed one foot much bigger than the other with large red marks round my ankles and what looked like a large circular bruise on my heel. It was red and blue, with a white centre and looked extremely angry. I was very surprised to find it was a pressure area. My feet had swollen so much and pressed against my shoe. After a few days with my feet up it subsided.

Yet, I am still feeling the after effects of the trip. This week I had a fairly quiet weekend crafting with friends and then saw a client Monday morning and I was exhausted. I fell asleep for 3 hours. Then Tuesday night I slept for 13 hours and woke up at 1pm! I used to be able to offset my illness after a trip with how fab it was to be there. Although the trip was fabulous, I'm not sure it was worth feeling this poorly. I have to find a different way of taking trips like this so that the weeks afterward are not so difficult. The problem is that once you start adding carers into the mix it becomes very expensive. So far I know to always book assistance, take enough money for cabs and don't try to walk anywhere. I shouldn't go in the middle of summer so maybe restrict visits to the cooler months and really try to stay off my feet as much as possible. I will get there, because I have so many things on the bucket list to do! For now I'm having a restful week with family, full of reading and lounging and hopefully will regain a bit of energy.