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.
Tuesday, 15 December 2009
Saturday, 5 December 2009
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
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
Friday, 27 November 2009
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.
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.
Sunday, 22 November 2009
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.
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.
Thursday, 19 November 2009
THE LAST OF WHAT'S PAST
This is the day of the consultation and I sit quietly, thinking, on the journey and in the waiting area. I left the Nintendo at home but made sure I had enough music on my phone to distract me without being too repetitive. Was this a good idea? Not if you are as inquisitive and chatty as me! I would rather chat to the other patients in the waiting area. It is true what they say – there is always someone worse off than you, people who cant use their legs at all and all sort of viruses I discovered later were around.
The Neurologist came and introduced himself and shook my hand saying he wouldn't be long, I felt to make sure I hadn't accidentally left my crown or tiara on.
I was weighed, which proved my scales were correct, and blood pressure taken. I have lost just over a stone in the past year and dropped 4 dress sizes in 18 months without trying not that I'm complaining, I needed to lose it plus some more.
Then came the consultation which consisted of thousands of questions about my health and various tests as before, The only problem was my brain – it was on holiday, a situation common in MS and so excused by the doc, I did explain that it is normal for me.
A student was sat in on the consult and the doc was fascinated by my eye movements the student said I was a perfect example of something but I cant remember what! I am sure it wasn't an insult though.
I had to try and balance on each leg – failed that! I had to walk in a straight line – failed that! Finally after loads moire questions that luckily mostly needed Yes/No answers I was told that I had been misdiagnosed regarding my Fibromyalgia and it was definitely MS.
I didn't know until then that there are different types – these are the two main categories
Secondary Progressive MS
Most people with relapsing remitting MS eventually develop ‘secondary progressive’ MS – around 65 per cent have developed it after 15 years.
Secondary progressive MS, as the name suggests, sees a progressive increase in people’s symptoms, but this progression can be very slow. Changes might be so slight that they are hard to notice for a long time.
Primary Progressive MS
Primary progressive MS affects about 10 to 15 per cent of people diagnosed with MS. It is called this because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
To get a definitive answer I would need further tests of a different sort, and so started my life as a pincushion.
A blood test straight away was needle number 1 and a urine test to make sure I had no infection so I could be given steroids to make me feel better, apparently any future 'relapses' would be treated in hospital with intravenous steroids but, because there was no definitive type yet I was given steroid tablets.
The MS nurses were introduced to me and took me to their office in order to answer any questions I may have but, as anyone who knows me will tell you, information has to rattle round inside my head for a while before it finds a way out of my mouth. Again I was told that was normal with MS, and the MS Nurse would be doing a follow up visit at my home in about 10 days time.
School was now at the beginning of term, lessons in MS were on the curriculum and it looks like it is going to be a long term,
The Neurologist came and introduced himself and shook my hand saying he wouldn't be long, I felt to make sure I hadn't accidentally left my crown or tiara on.
I was weighed, which proved my scales were correct, and blood pressure taken. I have lost just over a stone in the past year and dropped 4 dress sizes in 18 months without trying not that I'm complaining, I needed to lose it plus some more.
Then came the consultation which consisted of thousands of questions about my health and various tests as before, The only problem was my brain – it was on holiday, a situation common in MS and so excused by the doc, I did explain that it is normal for me.
A student was sat in on the consult and the doc was fascinated by my eye movements the student said I was a perfect example of something but I cant remember what! I am sure it wasn't an insult though.
I had to try and balance on each leg – failed that! I had to walk in a straight line – failed that! Finally after loads moire questions that luckily mostly needed Yes/No answers I was told that I had been misdiagnosed regarding my Fibromyalgia and it was definitely MS.
I didn't know until then that there are different types – these are the two main categories
Secondary Progressive MS
Most people with relapsing remitting MS eventually develop ‘secondary progressive’ MS – around 65 per cent have developed it after 15 years.
Secondary progressive MS, as the name suggests, sees a progressive increase in people’s symptoms, but this progression can be very slow. Changes might be so slight that they are hard to notice for a long time.
Primary Progressive MS
Primary progressive MS affects about 10 to 15 per cent of people diagnosed with MS. It is called this because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
To get a definitive answer I would need further tests of a different sort, and so started my life as a pincushion.
A blood test straight away was needle number 1 and a urine test to make sure I had no infection so I could be given steroids to make me feel better, apparently any future 'relapses' would be treated in hospital with intravenous steroids but, because there was no definitive type yet I was given steroid tablets.
The MS nurses were introduced to me and took me to their office in order to answer any questions I may have but, as anyone who knows me will tell you, information has to rattle round inside my head for a while before it finds a way out of my mouth. Again I was told that was normal with MS, and the MS Nurse would be doing a follow up visit at my home in about 10 days time.
School was now at the beginning of term, lessons in MS were on the curriculum and it looks like it is going to be a long term,
Tuesday, 17 November 2009
THE END OF DISCOVERY AND THE BEGINNING OF LEARNING
Well now I knew the Neurosurgeon's educated opinion and the words were out there in the ether. Once said words can never be unsaid all that can be achieved is clarification. People, trying to be helpful, such as my other half, pointed out that until I had seen the Neurologist nothing was definite. [That was true so ALAN WHY DID YOU TELL PEOPLE???] I didn't tell anyone except close family and friends, excluding my Mother, after all when they said it wasn't that would mean fewer people to have to explain to.
I became an avid letterbox watcher, anticipating a letter from the hospital, After 3 weeks I rang the hospital as the Neurosurgeon had suggested to see how much longer my 'urgent' appointment would be. I was getting anxious because every time I sneezed or coughed I had, and still have, a searing pain in one of my temples and so taking a lot of paracetamol, a fact that I was uncomfortable with.
No appointment was forthcoming and, frankly, the admin staff at the hospital was less then helpful. I told my GP and the reaction I got was more worrying than hearing nothing. I was told that I DID need an urgent appointment because I needed to start treatment as soon as possible but that still did not make me realise the seriousness of the illness, I needed the consultation to for my own peace of mind. Peace of Mind??! More like Piece of Mind or Mind in Pieces.
Eventually the follow up appointment with the Neurosurgeon arrived, 4 months after the consultation where I had first been told MS. The Neurosurgeon was not best pleased that I hadn't heard anything and even before I entered his consulting rooms he wanted to know why. I must say I enjoyed watching the admin staff wriggle out of that, eventually the reason given was that the Neurosurgeon had not 'ticked' the correct box. Looking back I didn't realise just how many different departments would be involved and therefore it was reasonable that the Neurology Department need a definite referral i.e. the correct boxes ticked before they begin to notify the other departments,
Eventually the appointment day with the Neurologist arrived – it had only taken 4.1/2 months instead of the 3 weeks originally indicated. I was relieved that at last I would have an answer. Little did I realise how much and how dramatically my life would change.
My next posting will pick up at that point and begin telling you about the process of my learning.
I became an avid letterbox watcher, anticipating a letter from the hospital, After 3 weeks I rang the hospital as the Neurosurgeon had suggested to see how much longer my 'urgent' appointment would be. I was getting anxious because every time I sneezed or coughed I had, and still have, a searing pain in one of my temples and so taking a lot of paracetamol, a fact that I was uncomfortable with.
No appointment was forthcoming and, frankly, the admin staff at the hospital was less then helpful. I told my GP and the reaction I got was more worrying than hearing nothing. I was told that I DID need an urgent appointment because I needed to start treatment as soon as possible but that still did not make me realise the seriousness of the illness, I needed the consultation to for my own peace of mind. Peace of Mind??! More like Piece of Mind or Mind in Pieces.
Eventually the follow up appointment with the Neurosurgeon arrived, 4 months after the consultation where I had first been told MS. The Neurosurgeon was not best pleased that I hadn't heard anything and even before I entered his consulting rooms he wanted to know why. I must say I enjoyed watching the admin staff wriggle out of that, eventually the reason given was that the Neurosurgeon had not 'ticked' the correct box. Looking back I didn't realise just how many different departments would be involved and therefore it was reasonable that the Neurology Department need a definite referral i.e. the correct boxes ticked before they begin to notify the other departments,
Eventually the appointment day with the Neurologist arrived – it had only taken 4.1/2 months instead of the 3 weeks originally indicated. I was relieved that at last I would have an answer. Little did I realise how much and how dramatically my life would change.
My next posting will pick up at that point and begin telling you about the process of my learning.
Saturday, 14 November 2009
NEARLY MODERN
Where was I?
Oh yes!
I was at my Neurosurgeon appointment for the numerous scans and tests results.
The brain and neck scans were no problem unless you were claustrophobic, each needing the to be placed differently – the brain scan needed the head to be kept still and so I was wearing a helmet like American footballers wear for protection. I actually found it very comfortable just lying still for 20 minutes, in fact, I was just about dozing when suddenly it was over.
X-Rays we all know very well from personal experience or security systems. [Unfortunately I hadn't any fish-bones or coins to display on mine]
The nerve conduction tests seemed more intimidating but were, at worst, momentarily uncomfortable. Electrodes were placed at intervals on my arm and the nerves stimulated by very mild electric shocks similar to the sensation felt when you knock your elbow. [Funny Bone Funny Bone? Who thought up that? Or is it some form of sarcastic wit?]
The Neurosurgeon looked at all the information and performed numerous tests of his own, pointing out to me the various points of interest [a tour inside my own head [useful], but this tour didn't include local landmarks and a tour guide holding up a rolled-up umbrella, This was an educational trip, I was being taught the basic of how the brain worked]
After many more tests such as on reflexes, and if I could feel the pins he sharper in any specific areas [is he an acupuncturist in his spare time?] accompanied with lots of Mmms and Ahas he took me back to his office and made his proclamation – he thought the results indicated MS but it would need a consultation with the Neurologist, my case would be classed as urgent and he would expect me to be seen within a month,
So I left his office with more of an answer than previously, but a 3 week wait seemed an eternity to me. but patience is a virtue they say. Patient patients is that not what the NHS is built upon?
In the meantime I was attending the Uroloogy Clinic where discussions where under-way regarding my bladder problems when possibility of MS was mentioned the Urologist wasn't surprised and I was put forward to have an in-dwelling catheter fitted, possibility before 2010. Because of my lack of dexterity and other problems along with the new diagnosis of MS I would have to be in hospital for approximately 3 days and be fitted with Supra Pubic type catheter. A what? The dictionary says a suprapubic cystostomy is a surgically-created connection between the urinary bladder and the skin which is used to drain urine from the bladder in individuals with obstruction of normal urinary flow. In other words I will have to wear a bag and valve system, Which doesn't sound too enthralling but will greatly enhance my life, not being affected by gravity and no leakage. Not only that but I will be able write the snow as good as any man!
I was surprised at the time scale because I naively had though it would be carried out in at Day Surgery. Stoopid, I hadn't been allowed to drive for 6 weeks whent I had my appendix out so why had I thought this would be any different? As I said previously my life without challenge wouldn't be my life.
Oh yes!
I was at my Neurosurgeon appointment for the numerous scans and tests results.
The brain and neck scans were no problem unless you were claustrophobic, each needing the to be placed differently – the brain scan needed the head to be kept still and so I was wearing a helmet like American footballers wear for protection. I actually found it very comfortable just lying still for 20 minutes, in fact, I was just about dozing when suddenly it was over.
X-Rays we all know very well from personal experience or security systems. [Unfortunately I hadn't any fish-bones or coins to display on mine]
The nerve conduction tests seemed more intimidating but were, at worst, momentarily uncomfortable. Electrodes were placed at intervals on my arm and the nerves stimulated by very mild electric shocks similar to the sensation felt when you knock your elbow. [Funny Bone Funny Bone? Who thought up that? Or is it some form of sarcastic wit?]
The Neurosurgeon looked at all the information and performed numerous tests of his own, pointing out to me the various points of interest [a tour inside my own head [useful], but this tour didn't include local landmarks and a tour guide holding up a rolled-up umbrella, This was an educational trip, I was being taught the basic of how the brain worked]
After many more tests such as on reflexes, and if I could feel the pins he sharper in any specific areas [is he an acupuncturist in his spare time?] accompanied with lots of Mmms and Ahas he took me back to his office and made his proclamation – he thought the results indicated MS but it would need a consultation with the Neurologist, my case would be classed as urgent and he would expect me to be seen within a month,
So I left his office with more of an answer than previously, but a 3 week wait seemed an eternity to me. but patience is a virtue they say. Patient patients is that not what the NHS is built upon?
In the meantime I was attending the Uroloogy Clinic where discussions where under-way regarding my bladder problems when possibility of MS was mentioned the Urologist wasn't surprised and I was put forward to have an in-dwelling catheter fitted, possibility before 2010. Because of my lack of dexterity and other problems along with the new diagnosis of MS I would have to be in hospital for approximately 3 days and be fitted with Supra Pubic type catheter. A what? The dictionary says a suprapubic cystostomy is a surgically-created connection between the urinary bladder and the skin which is used to drain urine from the bladder in individuals with obstruction of normal urinary flow. In other words I will have to wear a bag and valve system, Which doesn't sound too enthralling but will greatly enhance my life, not being affected by gravity and no leakage. Not only that but I will be able write the snow as good as any man!
I was surprised at the time scale because I naively had though it would be carried out in at Day Surgery. Stoopid, I hadn't been allowed to drive for 6 weeks whent I had my appendix out so why had I thought this would be any different? As I said previously my life without challenge wouldn't be my life.
Friday, 13 November 2009
CONTINUING MY BACKROUND STORY
Part III - I am getting up to date - Honest - Slow but Sure
I ended that last post with life as it was at the end of 2006, and so my world continued for a while.
2008 was the year when things I started to get answers, [Started I said]
In early 2008 my Mother had a continuous pain in her back and further examinations showed it to be osteoporosis, and, as she had 10 concrete steps up to her door level, and another 3 to the door, the GP recommended that she move to a level access property. Was that fun! She needed to be in the same area because she didn't want change GP surgeries, and it had to be accessible for me on my mobility scooter.
Oh what fun and games began then! I was travelling to the local housing department about 3 times a day and in-between trying to help my mother do the preparations for moving. I was putting myself under an enormous amount of stress I know but what alternative was there? After two weeks of this strain I lost the use 0f my right hand.
I am right handed so couldn't write, use a keyboard 'blind' as I had been taught or even hold anything securely, my hobbies have always involved writing and dexterity so being unable to use my right hand depressed me.
I remember saying at the time I thought it was stress related and being told not to be silly but my instincts were to be proved right – note to self, ALWAYS, but ALWAYS listen to your body.
I continued with an annoying hand hoping the use would return at some point. But, as fate dictated, the hand did not improve, and I was now getting pains in my neck. Time for another GP appointment methinks. I was referred to a Neurosurgeon and X-rays. The X-rays showed that the Spondylosis had progressed downward and was now affecting 3 neck discs whereas it had been 2 before. My GP suggested that there may be an operation that could release a possible trapped nerve. I hoped and hoped that it could be done and then I could return back to some sort of normality in my life. I had forgotten that 'normality' was something that my life seems to avoid like the plague.
I now had to wait for the Neurosurgical appointment – a letter to attend for a MRI scan for my neck arrived in December 2008. The only problem was it was at a different hospital [although still local], and using a portable unit, which was just like a very large removal van and in a crowded car park. The technician told me the results would take about 7 weeks as they had to go halfway around the world first.
Back to the neurosurgeon for the result, he wanted another MRI and brain scan. The shock was that they had actually found a brain the first time. I hadn't believed there was one there. Maybe it was having a rest? No. it was busy plotting and planning how best to mess up my life.
Now it was early summer 2009 and I was back with the Neurosurgeon after having had in total 2 brain scans. 1 neck scan, 2 X-rays and 1 Nerve Conduction Test. Surely this amount of technology wouldn't be wasted. I believe that any problem can be solved/answered by technology if used correctly.
I ended that last post with life as it was at the end of 2006, and so my world continued for a while.
2008 was the year when things I started to get answers, [Started I said]
In early 2008 my Mother had a continuous pain in her back and further examinations showed it to be osteoporosis, and, as she had 10 concrete steps up to her door level, and another 3 to the door, the GP recommended that she move to a level access property. Was that fun! She needed to be in the same area because she didn't want change GP surgeries, and it had to be accessible for me on my mobility scooter.
Oh what fun and games began then! I was travelling to the local housing department about 3 times a day and in-between trying to help my mother do the preparations for moving. I was putting myself under an enormous amount of stress I know but what alternative was there? After two weeks of this strain I lost the use 0f my right hand.
I am right handed so couldn't write, use a keyboard 'blind' as I had been taught or even hold anything securely, my hobbies have always involved writing and dexterity so being unable to use my right hand depressed me.
I remember saying at the time I thought it was stress related and being told not to be silly but my instincts were to be proved right – note to self, ALWAYS, but ALWAYS listen to your body.
I continued with an annoying hand hoping the use would return at some point. But, as fate dictated, the hand did not improve, and I was now getting pains in my neck. Time for another GP appointment methinks. I was referred to a Neurosurgeon and X-rays. The X-rays showed that the Spondylosis had progressed downward and was now affecting 3 neck discs whereas it had been 2 before. My GP suggested that there may be an operation that could release a possible trapped nerve. I hoped and hoped that it could be done and then I could return back to some sort of normality in my life. I had forgotten that 'normality' was something that my life seems to avoid like the plague.
I now had to wait for the Neurosurgical appointment – a letter to attend for a MRI scan for my neck arrived in December 2008. The only problem was it was at a different hospital [although still local], and using a portable unit, which was just like a very large removal van and in a crowded car park. The technician told me the results would take about 7 weeks as they had to go halfway around the world first.
Back to the neurosurgeon for the result, he wanted another MRI and brain scan. The shock was that they had actually found a brain the first time. I hadn't believed there was one there. Maybe it was having a rest? No. it was busy plotting and planning how best to mess up my life.
Now it was early summer 2009 and I was back with the Neurosurgeon after having had in total 2 brain scans. 1 neck scan, 2 X-rays and 1 Nerve Conduction Test. Surely this amount of technology wouldn't be wasted. I believe that any problem can be solved/answered by technology if used correctly.
THE BEGINNING AND BACKGROUND TO WHERE I AM NOW
Part I
Before I start telling the story I ought to point out that I am naturally a 'glass half full' type and, I hope it does show, I can usually find a joke in even the most dire situations. So I apologise in advance for anything I may say that gives the impression of moaning.
I was diagnosed with Fibromyalogia and Spondylosis 12 years ago, I felt that diagnosis was a life-changing event but little did I know the drama that would follow now, in 2009.
In 1997 I lived in an area where the GPs were very overworked and the Senior Partners very comfortable in their rut. I'm not in any way blaming them, at the time I had an answer to my back problems, even been told that to continue working would lead to a wheelchair situation [I had a very physical job - standing for 8 hours at a time and carrying big stock boxes] The only problem was the house that I lived in at the time, it was 3 storeys high and on the side of a steep hill, a car was essential but I couldn't afford one with no job. I loved the people around me and would miss them but I felt I had no choice but to move.
So began the registration process with the housing department to allow me to move and driving around looking for empty properties. My daughter had already left home and who knows where my son was going to end up as he was attending University at the time so I had the advantage of asking for a downsize to a two bedroomed property from the present three bedrooms. There were other issues to consider, perhaps it would be advantageous to move back to the area where I had lived previously, we knew the area and it was near to my mother who couldn't get to the house on the hill, it being two steep a walk from the bus stop.
So, I ended up doing an 'injured' animal routine and going back to where I felt safe to lick my wounds. It was pointed out to me that there would come a day when I wouldn't have a car [not realising the car would disappear within a couple of months - the exhaust fell off and others factors meant it wamted too much work] and so this residence turned out to be ideal, within walking distance of Mom and the small shops and a short bus ride from a major shopping Mall.
Over the past 11 years however, the drawbacks of the house have become very evident, there is no community spirit because the people I knew previously have either moved on and/or forgotten me, I am surrounded by either elderly residents living in their own little world of habit, [and have a completely irrational hatred of me because I am not like them] or young couples at work all day. But the good points were that my mother came and helped me as much as possible when her angina wasn't affected by the weather and as the house had been totally neglected for about 40 years I had plenty to keep me busy doing as much DIY as I was capable of and became very creative,[mainly due to being poor] but a plus point was I had returned to GPs I had known for years and were friends who I could talk to.
So over the next few years things continued apace and I didn't seem to be getting any worse once I had learned what to avoid. Then my mother had her first stroke albeit a minor one and I developed walking difficulties so I bought a small mobility scooter to help me get to her house, I needed quick access to her, but I didn't realise that the scooter I had bought wouldn't cope very well with the hills here so although I was more comfortable I was actually slower than walking! A few weeks later she had a stronger stroke that temporally took her speech and her writing ability so she was in need of even more care. I invested in a bigger scooter that didn't mind the hills and was quicker and safer! [I've only tipped this one over one time compared to three on the small one due to the lack of dropped kerbs] My mother managed to have another stroke a few weeks later - 3 strokes within 5 weeks was being a bit greedy I thought but Hey! Ho! that's life [well mine anyway]
And that was life until half-way through 2006, to find out the happenings after then until the present day you will have to read my next posting which will hopefully be tomorrow
Before I start telling the story I ought to point out that I am naturally a 'glass half full' type and, I hope it does show, I can usually find a joke in even the most dire situations. So I apologise in advance for anything I may say that gives the impression of moaning.
I was diagnosed with Fibromyalogia and Spondylosis 12 years ago, I felt that diagnosis was a life-changing event but little did I know the drama that would follow now, in 2009.
In 1997 I lived in an area where the GPs were very overworked and the Senior Partners very comfortable in their rut. I'm not in any way blaming them, at the time I had an answer to my back problems, even been told that to continue working would lead to a wheelchair situation [I had a very physical job - standing for 8 hours at a time and carrying big stock boxes] The only problem was the house that I lived in at the time, it was 3 storeys high and on the side of a steep hill, a car was essential but I couldn't afford one with no job. I loved the people around me and would miss them but I felt I had no choice but to move.
So began the registration process with the housing department to allow me to move and driving around looking for empty properties. My daughter had already left home and who knows where my son was going to end up as he was attending University at the time so I had the advantage of asking for a downsize to a two bedroomed property from the present three bedrooms. There were other issues to consider, perhaps it would be advantageous to move back to the area where I had lived previously, we knew the area and it was near to my mother who couldn't get to the house on the hill, it being two steep a walk from the bus stop.
So, I ended up doing an 'injured' animal routine and going back to where I felt safe to lick my wounds. It was pointed out to me that there would come a day when I wouldn't have a car [not realising the car would disappear within a couple of months - the exhaust fell off and others factors meant it wamted too much work] and so this residence turned out to be ideal, within walking distance of Mom and the small shops and a short bus ride from a major shopping Mall.
Over the past 11 years however, the drawbacks of the house have become very evident, there is no community spirit because the people I knew previously have either moved on and/or forgotten me, I am surrounded by either elderly residents living in their own little world of habit, [and have a completely irrational hatred of me because I am not like them] or young couples at work all day. But the good points were that my mother came and helped me as much as possible when her angina wasn't affected by the weather and as the house had been totally neglected for about 40 years I had plenty to keep me busy doing as much DIY as I was capable of and became very creative,[mainly due to being poor] but a plus point was I had returned to GPs I had known for years and were friends who I could talk to.
So over the next few years things continued apace and I didn't seem to be getting any worse once I had learned what to avoid. Then my mother had her first stroke albeit a minor one and I developed walking difficulties so I bought a small mobility scooter to help me get to her house, I needed quick access to her, but I didn't realise that the scooter I had bought wouldn't cope very well with the hills here so although I was more comfortable I was actually slower than walking! A few weeks later she had a stronger stroke that temporally took her speech and her writing ability so she was in need of even more care. I invested in a bigger scooter that didn't mind the hills and was quicker and safer! [I've only tipped this one over one time compared to three on the small one due to the lack of dropped kerbs] My mother managed to have another stroke a few weeks later - 3 strokes within 5 weeks was being a bit greedy I thought but Hey! Ho! that's life [well mine anyway]
And that was life until half-way through 2006, to find out the happenings after then until the present day you will have to read my next posting which will hopefully be tomorrow
Thursday, 12 November 2009
UP UNTIL END OF 2006
[Part II] Bear with me it'll be up to date soon.
By the summer of 2006 my health had been deteriorating for some [at the time] unknown reason. My GP referred me to a Rheumatologist to see if we could get to the root of my problems. The blood tests results came back showing indications of joint inflammation, which indicated more the possibility of Rheumatoid Arthritis. The problems with my concentration and other cognitive functions [The dictionary definition of cognitive is 'The mental process of knowing, including aspects such as awareness, perception, reasoning, and judgement.' I just refer to it as 'being flaky' or that the brain has gone on holiday without me, some people say there is little difference. Thanks kids!] came under much discussion with my GP over the next few months, in the end we decided it was caused by the medication and so changed my painkillers to less potent ones. [It was at this stage that I realised I could never be an addict regarding illicit substances, Tobacco and Alcohol however are a different matter ]
Towards the end of 2006 I received a letter stating that my over 50s mammogram [a service instigated by my GP Practice] was due.
As I had never been treated at the hospital regularly prior to this I did not know that I could have ambulance or medicar assistance. [I now know of the pluses and minuses connected with both these methods] Not knowing about the assistance available and having no private transport [too much weight when we moved] I used a Private Hire taxi. So, up to know the only loss of balance had been in the shower whenever I tilted my head to rinse my hair, [ever tried washing your hair without tilting? - not possible - you may think you aren't tilting but you are. Discovered by much trial and error] which was attributed to the known factor of Spondylosis [Arthritis in my neck], walking was a problem but it had been something I had borne for many years and expected not to change for either better or worse. [Was I naive? At the time I thought not but in reality would have received 12 out of 10 in an exam]
What changed? Well on that fateful day at the beast screening Clinic I took my walking stick with me and travelled by taxi. I had been told by the Clinic that there was a ramp at the rear entrance for use of the disabled. [thank you very much but I wasn't disabled enough to use it was I????] The Clinic building was situated beside a cross-roads, a converted Victorian residence, and had a set of wide steps leading to the entrance, wide steps no problem with them is there? [WRONG]
I emerged from the Taxi on the corner to attend my appointment and suddenly there is no floor or there was a hair on the ground or my shoes came to life, whichever. I experienced my first fall - I was walking towards the building when I suddenly collided with the payment. So the picture now changes – I was on my knees on the pavement feeling scared, stupid, dazed and shocked. I had heard my front teeth hit the concrete and felt numbness so I thought I had smashed my front teeth at least. [How can you feel a lack of sensation? If something is numb isn't it without feeling?] In comes 3 or maybe 4 knights in shining armour. It turned out that 3 people carrier ambulances had been at the crossroads and therefore seen me fall. Paramedics [my knights] had immediately leapt to my aid and assured me that my teeth were OK. I had managed to twist and lift my chin as I fell thereby protecting my teeth. Of course me being the obstinate independent person that I am. I said I didn't need to be treated. So my knights helped me inside and I sat in reception trying to compose myself. When I returned home and looked at myself, the outcome was plain to see, 1 lip split open, 2 black eyes, numerous grazes on the chin and nose. [It reminded me of many years ago when my father had fallen off a kerb and broken his nose etc. - I couldn't look at him for weeks or even be in the same room – so was this payback time?]
I immediately made two appointments, 1 the dentist and 1 the doctor, the doctor sent me to have X-rays on my cheekbone and hips. The dentist also did X-rays and found I had just knocked my jaw slightly out line, I had managed to protect the teeth themselves.[To this day my dentist keeps telling me how lucky I am] I had no hip damage apart from muscle strain by the twisting motion I had made to try and protect my face.
After this time falling became just another way of way of life, I can easily recall at least two occasions when I have just crumpled for no obvious reason whilst in the garden. One stick was obviously not giving me enough stability so I compensated by purchasing a Rollator [or my baby walker as I call it] This nifty bit of kit is ideal, 2 handles, 4 wheels and a seat but it all folds up neatly to fit in a taxi boot. So I was no longer restricted to only being able to travel on the tram [Have tram will travel so why did I never venture further than the town centre??!?] Actually I went on holiday 2 or 3 times, mainly to accompany my mother.
So that was how it continued and would so I thought. [Never, NEVER, NEVER presume anything or tempt fate].
By the summer of 2006 my health had been deteriorating for some [at the time] unknown reason. My GP referred me to a Rheumatologist to see if we could get to the root of my problems. The blood tests results came back showing indications of joint inflammation, which indicated more the possibility of Rheumatoid Arthritis. The problems with my concentration and other cognitive functions [The dictionary definition of cognitive is 'The mental process of knowing, including aspects such as awareness, perception, reasoning, and judgement.' I just refer to it as 'being flaky' or that the brain has gone on holiday without me, some people say there is little difference. Thanks kids!] came under much discussion with my GP over the next few months, in the end we decided it was caused by the medication and so changed my painkillers to less potent ones. [It was at this stage that I realised I could never be an addict regarding illicit substances, Tobacco and Alcohol however are a different matter ]
Towards the end of 2006 I received a letter stating that my over 50s mammogram [a service instigated by my GP Practice] was due.
As I had never been treated at the hospital regularly prior to this I did not know that I could have ambulance or medicar assistance. [I now know of the pluses and minuses connected with both these methods] Not knowing about the assistance available and having no private transport [too much weight when we moved] I used a Private Hire taxi. So, up to know the only loss of balance had been in the shower whenever I tilted my head to rinse my hair, [ever tried washing your hair without tilting? - not possible - you may think you aren't tilting but you are. Discovered by much trial and error] which was attributed to the known factor of Spondylosis [Arthritis in my neck], walking was a problem but it had been something I had borne for many years and expected not to change for either better or worse. [Was I naive? At the time I thought not but in reality would have received 12 out of 10 in an exam]
What changed? Well on that fateful day at the beast screening Clinic I took my walking stick with me and travelled by taxi. I had been told by the Clinic that there was a ramp at the rear entrance for use of the disabled. [thank you very much but I wasn't disabled enough to use it was I????] The Clinic building was situated beside a cross-roads, a converted Victorian residence, and had a set of wide steps leading to the entrance, wide steps no problem with them is there? [WRONG]
I emerged from the Taxi on the corner to attend my appointment and suddenly there is no floor or there was a hair on the ground or my shoes came to life, whichever. I experienced my first fall - I was walking towards the building when I suddenly collided with the payment. So the picture now changes – I was on my knees on the pavement feeling scared, stupid, dazed and shocked. I had heard my front teeth hit the concrete and felt numbness so I thought I had smashed my front teeth at least. [How can you feel a lack of sensation? If something is numb isn't it without feeling?] In comes 3 or maybe 4 knights in shining armour. It turned out that 3 people carrier ambulances had been at the crossroads and therefore seen me fall. Paramedics [my knights] had immediately leapt to my aid and assured me that my teeth were OK. I had managed to twist and lift my chin as I fell thereby protecting my teeth. Of course me being the obstinate independent person that I am. I said I didn't need to be treated. So my knights helped me inside and I sat in reception trying to compose myself. When I returned home and looked at myself, the outcome was plain to see, 1 lip split open, 2 black eyes, numerous grazes on the chin and nose. [It reminded me of many years ago when my father had fallen off a kerb and broken his nose etc. - I couldn't look at him for weeks or even be in the same room – so was this payback time?]
I immediately made two appointments, 1 the dentist and 1 the doctor, the doctor sent me to have X-rays on my cheekbone and hips. The dentist also did X-rays and found I had just knocked my jaw slightly out line, I had managed to protect the teeth themselves.[To this day my dentist keeps telling me how lucky I am] I had no hip damage apart from muscle strain by the twisting motion I had made to try and protect my face.
After this time falling became just another way of way of life, I can easily recall at least two occasions when I have just crumpled for no obvious reason whilst in the garden. One stick was obviously not giving me enough stability so I compensated by purchasing a Rollator [or my baby walker as I call it] This nifty bit of kit is ideal, 2 handles, 4 wheels and a seat but it all folds up neatly to fit in a taxi boot. So I was no longer restricted to only being able to travel on the tram [Have tram will travel so why did I never venture further than the town centre??!?] Actually I went on holiday 2 or 3 times, mainly to accompany my mother.
So that was how it continued and would so I thought. [Never, NEVER, NEVER presume anything or tempt fate].
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