Keep taking the Medicine

The past few days have been all about re-setting my medication. This is an annoying and time consuming pastime that is happening all too often these days. I am in the final stretch of my Counselling diploma so my brain is full of CPD, PDP, CBT, TA and loads of other initials that I can barely remember. This means that I am extra fatigued, but also my cognitive abilities are a little bit stretched. There is such a thing as fibro-fog and I think my pain syndrome certainly gives me a dose of that, but I think there is an equivalent feeling in MS where the slightest distraction during a task means that it all goes 'tits up'. In the last year I have: gone to an appointment at the GP, found out I didn't have one then realised I should have been at the dentist; sorted out the work I wanted in an assignment and the work I didn't want to include then put the wrong pile in; started to forget birthdays and even my friend's children's names. Add to this my list of medication and you can see why I'm starting to feel senile.

Unfortunately, it takes a never ceasing cocktail of drugs to keep me moving and doing as much as I do - probably about half of what I want to do leading to intense frustration. I am a chatty person who loves to be out with friends and family doing things. I am also always full of ideas of things to do, see and make now that my friend and me have a little creative business ticking alongside our Occupational Therapy. I have taken to keeping lists: places I'd like to visit, where I'd like to stay, books I want to read, as well as an ongoing sketch and ideas book for our creative ventures. I am sometimes bursting full of enthusiasm, usually at the point when my body is saying 'no more for now'. Only those who know me well, know how hard it is to keep my enthusiasm while having the balance with my physical need for rest, sleep or just to 'be'. My counselling training has played a large part in this and I have noticed while writing my final piece of work - a self-appraisal - how much my training has taught me about living as well as working. Over the last three years my medication has doubled and the invasive procedures needed to keep my pain at bay have also increased.

If I don't keep my medication and treatment plan at the forefront of what I do I can end up in bed for a fortnight. In the swirl of the last few weeks I have missed both. The admin surrounding my excellent pain clinic is very poor, and they have messed up my appointments once again. I was transferred to a different consultant without my knowledge so I telephoned to complain i wanted my existing consultant. They could make the change in the appointment department but could not give me the treatment appointment I needed only a clinic appointment. I explained I had just had a clinical review 2 months ago and needed an ongoing treatment appointment. She could not help me and suggested I telephoned the secretary. I did. For a fortnight. Every single day. I either got no answer at all or an answering machine that ensured me they would ring me back. I left 7 separate messages. They didn't phone me. I eventually resigned myself to waiting for the clinic appointment even though my treatment was due in December and the appointment was for May. I was rooting around for my letter last Thursday and had the date in the diary for this Wednesday. I rang the appointments department to say I hadn't received a letter. They told me my appointment was on April 15th. I don't know whether this is me or them!! I assured them I had the appointment written down for 20th May, but now I will have to wait another 3 months without treatment. I have a series of injections in my spine. 21 in all from my neck down to my coccyx. This reduces stiffness in my spine but also reduces spasm in the muscles coming from the spine, that causes nerve pain into my elbows and all the way down the backs of my legs. Without them I am struggling with walking, getting in and out of chairs, getting in the car, driving, bathing and pretty much everything. On my worst day I can't even lift my arms up to my head to wash my hair. I have to do this weird Dale Winton like movement where I wash my hair sat down, with my head bent forwards and my elbow still clamped to my side. Its like a T-Rex trying to change a quilt cover. Very bloody difficult.

In place of my pain treatment I have been having physiotherapy where a neuro-physio comes out to the house. This has been fantastic because previously I had been expected to drive all the way to Lincoln so I was tired before I got there and too tired to drive home afterwards. Now we have a cup of tea, talk about what's happening and then she works on my muscles. In the last two months the restriction in my thoracic spine due to muscles spasm is now spreading round my ribs in a sort of hug. This is not the warm, friendly type of hug. Its more like a boa constrictor winding its way round my torso. It has even started to restrict my breathing, jamming up my diaphragm, leading to chest infections. I spend a couple of days after physio cursing her name and clutching my bruised ribs then about 10 days later checking when she's coming again. It is a relationship with more S and M than the 50 Shades movie.

Added to this is the medication which I bungled so completely a couple of days ago. I had an emergency dentist appointment because I thought I had an infection under my crown. It turned out I was right and needed some antibiotics. I started them straight away. On Friday morning I felt dreadful, the pain was shooting up my nose and into my head, I felt groggy and generally unwell. I was gathering my medication to go downstairs when the door bell rang. I picked up my antibiotics and paracetamol thinking I would go back for the main wallet of meds. Then while talking to the postman, giving the dog biscuits, feeding the cats and putting the kettle on I totally forgot about my normal meds and assumed I'd taken them. I took my paracetamol and antibiotics, put some rubbish hoarding programme on the TV and nodded off. I woke at 2pm completely disorientated, still in my pyjamas, and in terrible pain all over. I was stiff and struggled to get up. I wondered what the hell was going on and wandered about thinking this infection was affecting my whole body. It was only when I'd come round half an hour later that I realised I hadn't taken my meds. I took them immediately but since my morphine is on a 12 hour cycle it threw out the whole weekend. I was at a point that the pain was so bad I couldn't have waited 6 hours to take it within my normal time range. The only thing to do was gradually move the dose back, so that night I waited up till 2am patiently till I take the next dose. Then I slept straight through Saturday morning to take the next dose at 12pm, then 11pm last night then 9.30am this morning to get me back to normal for the week ahead. It means I missed working on our latest cushion order, I couldn't do my home work, I missed a vintage fair yesterday and today will be spent mainly in pyjamas resting up for college tomorrow.

If I didn't take my meds I don't know where I'd be. I have daydreams where I stop taking all the drugs and follow some wonderful herbal programme and diet that will keep me healthy and balanced, but I know it would be very hard for me to give up some of the drugs I'm on. I have some difficult side effects too: constipation, drowsiness, dry mouth and eyes, stomach acid, increased appetite and weight gain, breast growth not to mention nightmares, headaches and low mood. However, without them and my leg muscles become so stiff I have a spastic gait, I feel depressed and anxious, I can't walk and would be using a wheelchair, and me independence would be gone. Of course the pain would be difficult to manage too. Now I am so far down the road I wonder which of my symptoms are due to the medical cocktail and which belong to my cocktail of auto-immune disorders.