MY WEEKLY TREATS AND PAPER WASTAGE FOR THE HOSPITAL

The first appointment letter to arrive was for the follow-up visit to the weekly clinic of the Neurologist. This was when my inability to write proved to be very fortuitous, because I can't use a paper diary and pen, everything is entered into my phone calendar. So when the Neurologist's secretary rang to inform me that she had a date for my lumbar puncture [some people just HAVE to deliver bad news] which would be after the follow up appointment and the Neurologist needed the to see the result of this and another brain scan before the follow up appointment, it meant changing the clinic appointment date and so the secretary moved the clinic appointment for the following week. That was no problem I just changed the date on my phone calendar = soon solved!

I should have known that the solution was too easy – the next appointment letter arrived, it was for the umpteenth brain scan. I need transport to the hospital and back, have done for years and to attend any department so why do they make appointments in an evening for me? I think it is due to the widespread belief that everyone has transport or access to transport, the looks I get when I tell anyone that I am no longer allowed to drive and my other half doesn't know how and neither do my offspring, people thinking I am joking – it seems as though having your own transport is taken for granted for people under 70 years of age. Well I am under 7o and have a license but no car, and given that every visit to any out-patient department and the result of such visit is noted on a mainframe computer which my GP can access, WHY ISN'T A MARKER PUT AGAINST MY NAME SO THAT TRANSPORT IS BOOKED AUTOMATICALLY?
No such system exists, therefore I am sent an appointment letter and then have to contact them, not easy as the majority of departments have an answer-message screening system. When I eventually speak to someone the appointment date has to be altered to ft the transport hours and, at the moment, that usually clashes with other appointments. End of rant.
So I had a rearranged Neurologist appointment when I received the appointment for the brain scan, and the transport game started again. It was relatively easy this time but the only available appointment that fitted with the transport hours was, again, for after the neurologist clinic appointment! Again I had to try and contact the admin department but this time the person I needed to speak to was on leave or only worked part time, I say this because she always seems to be off at the end of the week. Anyway I did speak to her and she agreed that the neurologist clinic appointment needed to be after the brain scan, she tried fit me into the following week's clinic but there were no vacancies, and there is no clinic for two weeks afterwards due to the Xmas break.
I had one appointment per week, which was fine by me because the journey to the hospital and back plus waiting at both ends of the appointment wears me out and I need at least 1 day to recover.
Everything was now sorted, [or so I thought] I went for my Lumbar Puncture which was not as bad as I imagined. I was taken to the Neurological day ward and told to lie on the bed and wait. A sister came to do the procedure, she explained what she would be doing, first of all giving me a local anaesthetic then a long needle would be inserted to draw some fluid off the spinal cord. That frightened me. No wonder it used to be called a Spinal Tap!
I was told to loosen my jeans and lay on my left-hand side curled up in a ball, a pillow was placed between me legs, then she sat down in a chair and inserted the local anaesthetic, she said it would sting but to me it was more of a burning sensation. Then it was time for the long needle, she had told me that it was not a precise science and there may be a lot of waggling it about, and boy did she have to waggle it. After a few “ouches!” she asked if I could feel the needle, the answer puzzled me, I could feel it in my stomach! Apparently it wasn't actually in my stomach but was catching my stomach nerve. The nurse then had more guidance once she knew were she was and found the place she wanted.
I had to lay still during the procedure which was difficult because the natural reaction to something painful is to try and pull away from it. I say painful, it was more discomfort than pain. I was told I had to lay flat for half an hour so I expected them to remove the pillow. But they didn't mean that flat! I was even allowed to lay on my side and brought a glass of water with a bendy straw as I was under instruction to drink a lot over the next 24 hours to bring the pressure back up.
The more painful thing that caused more trouble was the blood test they had to do afterwards. I have always been a coward when it comes to sticking syringes into my arm, 3 different nurses and 3 bruises later they did eventually manage to get the blood, the sister did mention that it would be easier if I was warm and although I thought I was hot, I was actually cold to touch. That is one of my problems, I feel very hot, especially my feet which are icy to touch, even if I catch my opposite leg with my foot. A problem compounded by me having bare feet in the house all of the time because my balance feels as though it is affected by shoes or slippers.
Then it was the usual routine of waiting for the ambulance to go home. A quick rant coming – sometimes, because I can walk unaided apart from my stick to the transport, a medicar is used which is just an ordinary taxi with an 'ambulance' sign in the windscreen. OK they don't get tips or ready cash this way but they do volunteer they aren't forced to do the ambulance run so WHY ARE SOME SO MISERABLE? If they hate the job so much Why do it? End of rant.
When I arrived home there was another letter waiting for me, this time from Urology with an appointment for my bladder pre-operation assessment. I don't know if it was a reaction to the stress of the lumbar puncture or the stress of the whole situation but I must admit it made me cry and throw things. I think I had pushed the bladder situation out of my mind whilst I was trying to digest all the MS information.
Anyway I was back on the needing transport treadmill, I rang the number in the letter immediately and Guess What? The answer phone message was on, it was Thursday afternoon and the letter had the appointment date for the following Wednesday so contact was imperative, but, no-one rang me back, this was also the situation on the Friday. I received a call on the Monday and was told that 48 hours notice was needed to arrange transport. If the woman who called had not been so nice I would have pointed out that if my call had been returned on the Thursday or Fridqy it would have been well over 48 hours. The day after the original was suggested but I already had an appointment for a contrast MRI on that day.
I will tell you later about the contrast MRI and how many times I have had to put changes in my phone calendar.

LIFE AS A PINCUSHION

So now I had finished the steroids but didn't have a clue as to what would come next. The effects of the steroids went away immediately and when I look back, it seems like looking back on your holiday, feeling fit and non-drowsy with the brain at 100% [OK so my brain had never been 100% but was at the same percentage as pre MS].



Some more visitors to help me, therapists, a physiotherapist and an occupational therapist called one afternoon with even more information. Apparently the pelvic muscles are the main ones affected and they would get in touch with a speech therapist who would help me with my swallowing and coughing as well as my slurred tired speech. The physiotherapist would order me a frame to be able to lift myself up to sitting position in a morning and then to stand, and she would be back in a week with a shorter walking stick as she believed mine was too high for me, and also show me the exercises I would need to do, Exercises? Exercises?! I hadn't got any energy to do anything especially not exercises, thoughts of keep-fit classes with super-fit forceful teachers come to mind.


The frame arrived a couple of days later and the fun I had that night trying to read around it! Eventually I chose the frame holding the book open position which seems to work to date. The day or so after the frame the physiotherapist came with my new sized stick and information about the dreaded exercises. Yet another leaflet came with her, I was amassing quite a pile in my folder, pity the eyes aren't working properly, at one point I discovered the joy of the magnifying glass, I now have them scattered around the house, the kitchen for reading the oven temperature on frozen food cartons, obviously the living room for just about anything, and in the bedroom to help [well try to] with the beauty process.


The exercises were quite easy, apart from the balance ones that is, now it was a case of remembering to do them on a daily basis, my memory has never been that good at the best of times but the MS seems to have taken it away altogether.


Then the appointments started arriving, and are still continuing, so more next time

THE STEROIDS FIVE DAY COURSE

When I got back the results of urine test I was clear and therefore could start taking the steroids. Would they work I wondered and what effect would they have? Numerous people had told me I would feel great because of the steroids, but was their 'feeling great' the same as my 'feeling great'?


Day one and I don't feel any different. Was I expecting too much?

I had been told that I must take the steroids before 9.30a.m. or they would stop me sleeping that night but the only effect I felt at first was not being able to sleep.
I decided the steroids are given to people such as me that don't have a serious enough reaction to the 'You've got MS' statement. They bombard you with information that goes right over your head then give you a week to digest it. The next stage is steroids in high doses that not only taste vile but are difficult to swallow when the throat isn't working properly. Because of the high dosage it also causes emotional instability, then the MS nurses visit and throw even more information at you such as the complete destruction of the immune system by the therapy drugs and steroids therefore need to have innoculations against viruses such as influenza and swine flu also the implications of having a healthy diet - no out of date food or insanitary conditions - being told that something that gives a healthy person stomach ache could be really serious for me.
The seriousness of it all and the lifestyle changes needed really begin to sink in, and people who have grasped the seriousness way ahead of me seem to pity me and I am slowly getting there. Its not just a balance, cognitive and speech problems it impinges on everything. I am not allowed to go the hospital [too many infectious people around] unless it is necessary i.e. being used as a pin cushion or having the operation for the catheter fitted because my bladder is getting mixed messages from my brain and so to empty my bladder down to a 'comfortable' level it's totally dependent on a type of gravity powered overflow method. Due to the brain message defect my rectal muscles don't work properly so I can't risk diahorrea or constipation, when I need to empty my bowels I just have to sit there and allow it do it in its time. And I thought my major problem was my lack of co-ordination and balance whenever I change direction, or not being able to do anything else whilst walking e.g. desperate for that coffee or that cold drink but I must remember I have to sit first before I can get a decent hand mouth co-ordination and not end up wearing the drink on the outside rather than being a nice sensation on the inside!
After a few days I did feel better physically though but have been warned not to try and catch up or do too much because when I have finished the course the 'fitness' will disappear in a flash and if I've done too much whilst feeling 'fit' I will suffer at this point, we shall see. However it is nice being able to watch programmes after 9pm.

QUESTIONS? WHAT QUESTIONS?

I now had the unenviable task of telling ny mother that I had MS. Oh joy – because I had MS but not knowing what type I couldn't tell her much, I had some useful leaflets but she can't see well so they were useless, so I did try and explain, but she only heard me talk of the spondylosis and keeps saying to my children that I have not had my test results back yet so don't know what is wrong me!


Because she only hears and absorbs what she want to we decided [the we being myself and my son and daughter] to keep mentioning MS whenever the opportunity arose. I told her all about the MS nurse's forthcoming visit and what I knew, but she I still insisted to my son & daughter that I knew nothing yet.

Meanwhile I was being a good girl and taking antibiotics for the urine infection. I had been told that I would have to finish the antibiotic course and have my urine re-tested to ensure their was no infection left before I could take the steroids. This took two weeks, 1 week taking the tablets and another to get the results. All the time the steroids were sat staring at me, I'm sure they had their arms crossed and were tapping their feet.

One particular morning the MS nurses called to see me, two of them. The noisy dog was shut outside where she did shut up. I had received more information from them during the interval between the consultation and the visit, but still had no questions.

What I really want to know is what will happen in the future? No one person can tell me that, it is a personal illness that depends upon one's individual situation. My only experience of MS has included wheelchairs and total incapacity.

By this time I had discovered the effect of crowds, Two days after my hospital visit I came down with a head cold and realised that the muscles that are used to cough aren't working properly plus the head pain when I did 'cough' or sneeze was intense, I think that pain is due to spondylosis not MS.

My best friend became the internet, forever looking up this symptom and that one, The main two sites I turn to are MSTrust and MSSociety. 2 charities that are very hard-working, knowledgeable and effective. I think I have downloaded every leaflet they produce. That's not to say I've read them all, but I've got them ready for when I want to.