What do the letters MS mean to you?
Microsoft? I think we will all recognise that one.
Manuscript? Many of my writer friends will relate to this.
Or multiple sclerosis? How many people really know what this means, I wonder. That question hit home the other day, when I had to explain my hidden disability.
Right from the beginning I've not been shy about my diagnosis. After all, I did announce it online and I've subsequently written an article about it. This approach would not be right for all, especially people whose employment might be put in jeopardy, but I'd rather that people knew that the underlying reason for wobbliness or occasional slurred speech is illness or MS fatigue, rather than assume I'd had a surplus of alcohol.
On Monday I took the bus into town to shop. I had a number of errands to run and was tired even before I started out. Waiting at the bus stop a lady smiled at me, but we didn't engage in conversation. Later that afternoon, when I was too exhausted to walk any further and the rain had started, I headed for home. On my bus I found the same lady, who pointed at the disabled seat next to her.
"I saw you in Marks & Spencer," she said. "You looked as if you were in pain."
I explained to her that I have multiple sclerosis, that walking is very tiring and can be painful due to stiffness and spasms, which aren't always well-controlled by my medication. I joked that on that afternoon I'd staggered from one bench to another and she said she'd often seen me out and about locally, walking at my very slow pace.
It was a bit of a conversation killer, to be honest. Most people don't have much idea what MS is like, especially in the earlier stages. The fact that each person with MS is affected in different ways doesn't help either. Before I was diagnosed I had imagined that the majority of people with MS were in wheelchairs, but that is definitely not the case.
We both got off at the same stop. My lovely fellow traveller, who looked considerably older than me, shot off at high speed, while I made my way slowly and painfully home to crash out on the sofa.
Showing posts with label MS. Show all posts
Showing posts with label MS. Show all posts
Friday, April 13, 2012
Tuesday, October 25, 2011
An MS update
I've just realised that I've not written about my MS for a long time. Now this is partly, of course, because it means that there has been no significant change to write about. Given that it is a progressive disorder, just pootling along in a sort of equilibrium has had to be good, right?
Over the past two years since diagnosis I've become much more body aware than I ever was. I notice small changes that indicate that something is starting to go wrong and I can act accordingly. Luckily my doctors recognise this. After all it's probably not every doctor that would accept that I know a bladder infection is about to start because my eyes feel strange. Especially when the urine test is clear. But the requested prescription always does the trick and gets me back to normal. I've since learned that this sort of weird occurrence is quite common in MS.
I feel at my best in the late spring, early summer and early autumn. My body hates cold and damp weather, but it doesn't like too much heat either. I am conscious that I walk better and further in pleasant weather but I'm not afraid to use a stick or even, on rare occasions, a walker with a seat if that will enable me to do some of the things I want with confidence. I've been on medication for stiffness and the pain of leg spasms since the start of the year and that has helped too.
I've been seeing a lovely physiotherapist for the last few months to work on dizziness and my core stability, as one side of my body is definitely weaker than the other. She is part of a rehabilitation team and that has led on to appointments next week with an occupational therapist and a speech therapist, because I have some functional weakness in my right hand and arm and a tendency to slur words a little when I am ill or very tired. None of this is earth shattering or even too horribly restrictive yet, but such problems are best tackled early if the access to therapists is offered, so my work doesn't become affected.
I feel lucky to be getting so much help. Sometimes I worry that it is because I am worse than I think I am, but just chatting to doctors or therapists makes me realise that I am at the higher functioning end of MS and that is where I want to stay. I think the input may be influenced by the fact that I am a carer and I am honest about the fact that because of Son 2 I don't get the amount of sleep I should, which is probably a factor in my dizziness. I'm usually pretty good at pacing myself, at taking notice of the spoon theory, but occasionally I forget that even on a good day I can't rush around like I used to and it takes me days to recover. It seems I never learn!
Over the past two years since diagnosis I've become much more body aware than I ever was. I notice small changes that indicate that something is starting to go wrong and I can act accordingly. Luckily my doctors recognise this. After all it's probably not every doctor that would accept that I know a bladder infection is about to start because my eyes feel strange. Especially when the urine test is clear. But the requested prescription always does the trick and gets me back to normal. I've since learned that this sort of weird occurrence is quite common in MS.
I feel at my best in the late spring, early summer and early autumn. My body hates cold and damp weather, but it doesn't like too much heat either. I am conscious that I walk better and further in pleasant weather but I'm not afraid to use a stick or even, on rare occasions, a walker with a seat if that will enable me to do some of the things I want with confidence. I've been on medication for stiffness and the pain of leg spasms since the start of the year and that has helped too.
I've been seeing a lovely physiotherapist for the last few months to work on dizziness and my core stability, as one side of my body is definitely weaker than the other. She is part of a rehabilitation team and that has led on to appointments next week with an occupational therapist and a speech therapist, because I have some functional weakness in my right hand and arm and a tendency to slur words a little when I am ill or very tired. None of this is earth shattering or even too horribly restrictive yet, but such problems are best tackled early if the access to therapists is offered, so my work doesn't become affected.
I feel lucky to be getting so much help. Sometimes I worry that it is because I am worse than I think I am, but just chatting to doctors or therapists makes me realise that I am at the higher functioning end of MS and that is where I want to stay. I think the input may be influenced by the fact that I am a carer and I am honest about the fact that because of Son 2 I don't get the amount of sleep I should, which is probably a factor in my dizziness. I'm usually pretty good at pacing myself, at taking notice of the spoon theory, but occasionally I forget that even on a good day I can't rush around like I used to and it takes me days to recover. It seems I never learn!
Sunday, March 27, 2011
Hello sunshine
I was at the doctor before Christmas asking about some symptoms which I thought might be multiple sclerosis related. In passing I happened to mention that my mood was low. I didn't feel truly depressed, didn't want or need medication, yet I still felt not quite right and mood disorders can be a hidden symptom of MS, so I thought it was worth highlighting.
The doctor asked if I ever suffered from seasonal affective disorder (SAD). I said no, because I'd never been aware of any connection between my mood and the seasons before. But now that the sun is out and the weather is becoming milder, I'm beginning to see there probably is a connection.
Like most people with MS I don't cope well in the heat, indeed both of my identified relapses have been in the summer. But almost two years on from diagnosis I can also recognise that I get far more stiffness and pain in the winter, that probably I function less well overall. This winter I've struggled to blog at all and I largely lost interest in social media, preferring just to lurk and only occasionally post because I was finding a number of people and conversational topics on Twitter upsetting. Don't worry, the problem was mine, not yours.
But with the appearance of the sun my mood has lightened. I've also started to take more vitamin D, the sunshine vitamin, but that deserves a blog post all of its own one day. I'm at my best in the spring and autumn, I must make the most of it.
The doctor asked if I ever suffered from seasonal affective disorder (SAD). I said no, because I'd never been aware of any connection between my mood and the seasons before. But now that the sun is out and the weather is becoming milder, I'm beginning to see there probably is a connection.
Like most people with MS I don't cope well in the heat, indeed both of my identified relapses have been in the summer. But almost two years on from diagnosis I can also recognise that I get far more stiffness and pain in the winter, that probably I function less well overall. This winter I've struggled to blog at all and I largely lost interest in social media, preferring just to lurk and only occasionally post because I was finding a number of people and conversational topics on Twitter upsetting. Don't worry, the problem was mine, not yours.
But with the appearance of the sun my mood has lightened. I've also started to take more vitamin D, the sunshine vitamin, but that deserves a blog post all of its own one day. I'm at my best in the spring and autumn, I must make the most of it.
Friday, December 31, 2010
2010
What a year it's been. Like most people, I guess, for me it has been a year of contrasts.
On the positive side I completed a novel. I thoroughly edited that novel and started to submit it to agents. I am using a slow targeted approach to my submissions so it is likely to be a long process. I made very few submissions of short work in the year, but Even More Tonto Short Stories, containing one of my short stories was finally published and I had an article on Powder Room Graffiti, a website I hope to write more for next year.
On the negative side it has been a year of trying to come to terms with new physical limitations. I know that I am lucky in that my MS is, as yet, relatively mild and I didn't suffer another relapse in the year, but the limitations are real, often painful, and frequently changing. Add to that some unrelated medical symptoms that still have to be fully investigated and some medication to trial and it is a period of uncertainty.
The boys have both had a very successful year but we are still existing under huge financial constraints, a situation which looks unlikely to change in the foreseeable future. Christmas therefore had to be a somewhat muted affair, which ended up with the washing machine dying in a somewhat dramatic fashion to round the year off in style. At least I've managed to order a new one before the VAT increase hits!
Wishing you all a happy and successful 2011 and just a reminder that from tomorrow I shall be taking part in a river of stones. I shall be writing my small stones as separate posts on this blog to enable them to be picked up as part of the project, but normal posts will continue too.
On the positive side I completed a novel. I thoroughly edited that novel and started to submit it to agents. I am using a slow targeted approach to my submissions so it is likely to be a long process. I made very few submissions of short work in the year, but Even More Tonto Short Stories, containing one of my short stories was finally published and I had an article on Powder Room Graffiti, a website I hope to write more for next year.
On the negative side it has been a year of trying to come to terms with new physical limitations. I know that I am lucky in that my MS is, as yet, relatively mild and I didn't suffer another relapse in the year, but the limitations are real, often painful, and frequently changing. Add to that some unrelated medical symptoms that still have to be fully investigated and some medication to trial and it is a period of uncertainty.
The boys have both had a very successful year but we are still existing under huge financial constraints, a situation which looks unlikely to change in the foreseeable future. Christmas therefore had to be a somewhat muted affair, which ended up with the washing machine dying in a somewhat dramatic fashion to round the year off in style. At least I've managed to order a new one before the VAT increase hits!
Wishing you all a happy and successful 2011 and just a reminder that from tomorrow I shall be taking part in a river of stones. I shall be writing my small stones as separate posts on this blog to enable them to be picked up as part of the project, but normal posts will continue too.
Friday, August 20, 2010
Lows and highs
The past week was seriously weird, a true rollercoaster.
A fatal traffic accident at the end of our road on Monday created drama and left everyone feeling shaken. In addition two friends have been seriously ill in hospital. Different hospitals and different reasons, but each another reminder of my own mortality.
It's just over a year since my diagnosis and I've been struggling with the anniversary. I'm no worse than I was this time last year, I'm actually significantly better, as I was in the throes of a major relapse back then. Looking at the overall picture there has been little significant deterioration. I am slowly learning to recognise my fluctuating symptoms and to listen to them, to accept my limitations. But it's not always easy.
On the upside, I've been out to see quite a few friends. Although Son 1 wasn't awaiting A level results, I've enjoyed hearing of his old schoolfriends getting university places. Son 1 is now motivated and doing well in his education, his turn will hopefully come. In the meantime he is working hard in a very worthwhile holiday and weekend job which he not only enjoys, but will look good on future applications.
Son 2 has been quite relaxed and enjoying the holiday, especially his playscheme sessions. We are now starting to gently remind him about his forthcoming transition to the further education unit and keeping our fingers tightly crossed.
A fatal traffic accident at the end of our road on Monday created drama and left everyone feeling shaken. In addition two friends have been seriously ill in hospital. Different hospitals and different reasons, but each another reminder of my own mortality.
It's just over a year since my diagnosis and I've been struggling with the anniversary. I'm no worse than I was this time last year, I'm actually significantly better, as I was in the throes of a major relapse back then. Looking at the overall picture there has been little significant deterioration. I am slowly learning to recognise my fluctuating symptoms and to listen to them, to accept my limitations. But it's not always easy.
On the upside, I've been out to see quite a few friends. Although Son 1 wasn't awaiting A level results, I've enjoyed hearing of his old schoolfriends getting university places. Son 1 is now motivated and doing well in his education, his turn will hopefully come. In the meantime he is working hard in a very worthwhile holiday and weekend job which he not only enjoys, but will look good on future applications.
Son 2 has been quite relaxed and enjoying the holiday, especially his playscheme sessions. We are now starting to gently remind him about his forthcoming transition to the further education unit and keeping our fingers tightly crossed.
Wednesday, April 14, 2010
What a difference sunshine makes...
We all know that warm, sunny weather lifts our spirits. But in my case it seems to give my muscles a boost too.
I've written before about how I've been suffering very painful spasms in one leg for close to three months now. I've always suspected that the onset of this annoying symptom was related to the exceptionally cold weather we had in January and medical opinion has confirmed that it could indeed be the case. Over the last week or so, as the weather gradually got warmer, the pain has receded. It's not gone completely, but I finally feel that it eventually will, which is a huge relief.
On Saturday I went into town and was able to walk around much more freely than I have since the onset. Just to prove it wasn't a fluke, I was able to do the same yesterday. I will have to build my activity up slowly, as fatigue may also be a factor, but I no longer feel scared that the intense pain could prove to be permanent. I've also found that just using a simple tubi-grip elastic support on the ankle (around which the pain now locates itself) is a huge help and I regret not having thought of that before. I'm to be referred for a proper specialist physiotherapy assessment, so when that it happens it will be interesting to see if they have any further ideas.
The end of the school holiday has also brought a return to my novel. Over Easter I wrote one short story, but didn't look at the novel at all. Now I can no longer put off writing the dreaded synopsis and I've made a start this morning...
I've written before about how I've been suffering very painful spasms in one leg for close to three months now. I've always suspected that the onset of this annoying symptom was related to the exceptionally cold weather we had in January and medical opinion has confirmed that it could indeed be the case. Over the last week or so, as the weather gradually got warmer, the pain has receded. It's not gone completely, but I finally feel that it eventually will, which is a huge relief.
On Saturday I went into town and was able to walk around much more freely than I have since the onset. Just to prove it wasn't a fluke, I was able to do the same yesterday. I will have to build my activity up slowly, as fatigue may also be a factor, but I no longer feel scared that the intense pain could prove to be permanent. I've also found that just using a simple tubi-grip elastic support on the ankle (around which the pain now locates itself) is a huge help and I regret not having thought of that before. I'm to be referred for a proper specialist physiotherapy assessment, so when that it happens it will be interesting to see if they have any further ideas.
The end of the school holiday has also brought a return to my novel. Over Easter I wrote one short story, but didn't look at the novel at all. Now I can no longer put off writing the dreaded synopsis and I've made a start this morning...
Friday, March 19, 2010
Living life to the full
Whether you agree or not with the legal and moral issues for which she has been fighting, Debbie Purdy is an inspiration (as is her husband Omar Puente). Whenever I read about the couple I am struck by how their positivity is enabling her to live life to the maximum for as long as she can, as this article so clearly shows.
I'm just not sure whether I'm yet ready to read her forthcoming autobiography. Maybe I'll buy a copy and put it away until I'm a little further down the line, perhaps to be pulled off the shelf if my own well of positivity starts to run dry.
For me, at the moment, it is far more important to remember the words of my GP that there are very many people living with MS who are much more mildly affected than Debbie Purdy (or Jacqueline du Pre for older readers). I'm currently lucky enough to be at that mild end, I don't have the same concerns as Debbie Purdy. I hope I never will.
I'm just not sure whether I'm yet ready to read her forthcoming autobiography. Maybe I'll buy a copy and put it away until I'm a little further down the line, perhaps to be pulled off the shelf if my own well of positivity starts to run dry.
For me, at the moment, it is far more important to remember the words of my GP that there are very many people living with MS who are much more mildly affected than Debbie Purdy (or Jacqueline du Pre for older readers). I'm currently lucky enough to be at that mild end, I don't have the same concerns as Debbie Purdy. I hope I never will.
Wednesday, March 10, 2010
Making a difference
It's only the middle of the week, but already there have been a couple of occasions where I have spoken to people and what I have said has made a real difference or will hopefully do so. I find that hugely satisfying. I get so much help and advice from others, it's lovely to be able to give back sometimes.
Other things have fallen into place too. I have my first appointment with the MS nurse booked for a day in April. When I agreed the date I hadn't realised that Son 2 would still be on holiday. Nor had I realised that it would be a home visit rather than a clinic appointment. So when I got the confirmation letter last week I must admit I panicked a little.
I could, of course, have changed the date. But I've waiting to see the nurse since my diagnosis last summer, as she had just gone on maternity leave then and has only now returned. She will be the pivotal health professional in my future care and I am already needing her advice, so I didn't want to postpone.
Luckily I have managed to book Son 2 into a playscheme for that day, so I should be able to have a calm appointment where I can think and talk with a clear head as she assesses my needs. Hopefully it will be the start of a relationship that will make a difference.
Other things have fallen into place too. I have my first appointment with the MS nurse booked for a day in April. When I agreed the date I hadn't realised that Son 2 would still be on holiday. Nor had I realised that it would be a home visit rather than a clinic appointment. So when I got the confirmation letter last week I must admit I panicked a little.
I could, of course, have changed the date. But I've waiting to see the nurse since my diagnosis last summer, as she had just gone on maternity leave then and has only now returned. She will be the pivotal health professional in my future care and I am already needing her advice, so I didn't want to postpone.
Luckily I have managed to book Son 2 into a playscheme for that day, so I should be able to have a calm appointment where I can think and talk with a clear head as she assesses my needs. Hopefully it will be the start of a relationship that will make a difference.
Thursday, February 11, 2010
Changes
It's been a strange week so far.
A meeting on Monday signalled the beginning of the end of something I've been involved with for 10 years, something I've worked at for love rather than money. I'm afraid I can't be more specific, but while I know that what is happening is for the best and was partially my own idea, the change inevitably brings sadness.
Added to that I have been hit hard with the realisation that I need to try to make a little money from my writing. Up to now I have only submitted very selectively on an occasional basis and mostly to non-paying markets, but once my novel editing is complete I really need to start trying to write for paying markets. In our current position every little bit of extra cash would help.
Just to add further to the joy I am suddenly feeling very fatigued today. Now this probably has something to do with the fact that Son 2 has got me out of bed between 5 and 6am every morning since Christmas, as some of my Twitter friends may have noticed. But severe fatigue is also a symptom of MS, so I'm keeping my fingers crossed that it's just something an early night might help, rather than another new symptom to add to the leg spasms.
I'm just hoping that Friday won't bring any further changes...
A meeting on Monday signalled the beginning of the end of something I've been involved with for 10 years, something I've worked at for love rather than money. I'm afraid I can't be more specific, but while I know that what is happening is for the best and was partially my own idea, the change inevitably brings sadness.
Added to that I have been hit hard with the realisation that I need to try to make a little money from my writing. Up to now I have only submitted very selectively on an occasional basis and mostly to non-paying markets, but once my novel editing is complete I really need to start trying to write for paying markets. In our current position every little bit of extra cash would help.
Just to add further to the joy I am suddenly feeling very fatigued today. Now this probably has something to do with the fact that Son 2 has got me out of bed between 5 and 6am every morning since Christmas, as some of my Twitter friends may have noticed. But severe fatigue is also a symptom of MS, so I'm keeping my fingers crossed that it's just something an early night might help, rather than another new symptom to add to the leg spasms.
I'm just hoping that Friday won't bring any further changes...
Thursday, February 04, 2010
The mysteries of MS - 3
The leg spasms have not gone away, so on Monday I decided it was time to report them to the GP. My appointment was yesterday. As I thought, there is nothing much she could offer to help, other than advice to keep moving and stretching the leg, and to carry on as I have been with heat pads and hot drinks, which do help.
Any treatment plan is in the hands of my neurologist, who I'm not due to see again until June. The GP didn't feel the new symptom warranted bringing forward that appointment, which is, of course, good news. At present the consultant's plan is just to deal with individual symptoms if necessary as they arise.
The thing is that although there are some treatments to alleviate MS symptoms they are apparently not very pleasant. Even the first option, in the case of a big relapse, would be high dose steroids. I'm keen to remain unmedicated for as long as I
can and to just be careful with diet and exercise and look after myself to the best of my ability that way.
Then there is another mystery. It appears that there is a possibility that my MS may not be MS at all, but another disorder masquerading as MS.
I had a slightly abnormal blood test last summer, which the neuro wasn't too excited about. It was repeated in December but I've not yet heard the result. This may mean that it was normal or more likely the hospital have lost the results or screwed up the test yet again.
If the result of the first test is replicated then apparently the abnormality could be at least partially causing my MS symptoms. Or something like that. As the GP says nobody really knows what MS is or what causes it. It could be a number of underlying issues which all produce similar outcomes.
My MRI scan and other symptoms were certainly indicative of a diagnosis of MS, the brain lesions were clear on the scan. I suspect that if the blood irregularity does prove to be part of the cause, then the overall diagnosis won't change but maybe the treatment plan will. Haematologists will probably become involved as well as the neurologist and the MS nurse who I am due to see for the first time in April.
It's just a game of wait and see.
Any treatment plan is in the hands of my neurologist, who I'm not due to see again until June. The GP didn't feel the new symptom warranted bringing forward that appointment, which is, of course, good news. At present the consultant's plan is just to deal with individual symptoms if necessary as they arise.
The thing is that although there are some treatments to alleviate MS symptoms they are apparently not very pleasant. Even the first option, in the case of a big relapse, would be high dose steroids. I'm keen to remain unmedicated for as long as I
can and to just be careful with diet and exercise and look after myself to the best of my ability that way.
Then there is another mystery. It appears that there is a possibility that my MS may not be MS at all, but another disorder masquerading as MS.
I had a slightly abnormal blood test last summer, which the neuro wasn't too excited about. It was repeated in December but I've not yet heard the result. This may mean that it was normal or more likely the hospital have lost the results or screwed up the test yet again.
If the result of the first test is replicated then apparently the abnormality could be at least partially causing my MS symptoms. Or something like that. As the GP says nobody really knows what MS is or what causes it. It could be a number of underlying issues which all produce similar outcomes.
My MRI scan and other symptoms were certainly indicative of a diagnosis of MS, the brain lesions were clear on the scan. I suspect that if the blood irregularity does prove to be part of the cause, then the overall diagnosis won't change but maybe the treatment plan will. Haematologists will probably become involved as well as the neurologist and the MS nurse who I am due to see for the first time in April.
It's just a game of wait and see.
Tuesday, January 26, 2010
The mysteries of MS - 2
Do you remember that I wrote about how the cold weather seemed to affect my MS?
Well for the last few days I've been feeling worse. The feeling of heavy legs turned into an intermittent very painful stiffness down the side of my right leg. I could feel the knots of tension in the muscle.
I suffered for a few days before deciding what to do. A long hot bath seems to temporarily ease the pain, so the cold weather seemed to be a logical guess for the cause. I'm now wearing two pairs of socks to try and keep my feet and lower legs warm and increasing the heat at home. By this morning the pain seemed to have moved from my knee area to my ankle and at the moment it seems to have gone altogether.
The only other time I've had such severe spasmodic pain was last summer, during my first big relapse. So I'm left wondering if I'm in the throes of another relapse, if there is more to come? Or did I just physically overdo it during a very busy week last week?
Either way I took a couple of days off writing and editing and have just had a very gentle return to the novel today.
Well for the last few days I've been feeling worse. The feeling of heavy legs turned into an intermittent very painful stiffness down the side of my right leg. I could feel the knots of tension in the muscle.
I suffered for a few days before deciding what to do. A long hot bath seems to temporarily ease the pain, so the cold weather seemed to be a logical guess for the cause. I'm now wearing two pairs of socks to try and keep my feet and lower legs warm and increasing the heat at home. By this morning the pain seemed to have moved from my knee area to my ankle and at the moment it seems to have gone altogether.
The only other time I've had such severe spasmodic pain was last summer, during my first big relapse. So I'm left wondering if I'm in the throes of another relapse, if there is more to come? Or did I just physically overdo it during a very busy week last week?
Either way I took a couple of days off writing and editing and have just had a very gentle return to the novel today.
Tuesday, December 22, 2009
The mysteries of MS
So I knew that for many people MS symptoms increase in heat. Warm weather and even a hot bath can leave an MS sufferer feeling worse. My own symptoms, even prior to diagnosis, have had a pattern of appearing in the summer months.
I was looking forward to the winter and hopefully some good health. I was pleased with my progress. Over the last few weeks I have been getting stronger and stronger, able to increase the distance I walk and not even needing my stick.
Then the snow arrived. Now my legs feel stiff and heavy, my back hurts and even my painkillers aren't providing relief. I can only walk a very short distance. Could this be the MS?
A quick investigation on Google shows that a minority of people with MS are affected by cold weather. It appears I may be one of them. Bugger.
In other news, son 2 is at home, on what should have been his final day of term, as the council has suspended transport. He is not impressed. But I would rather he was here than out on dangerously icy roads. How is it that Scandinavia and even Scotland can deal with snow and ice, while the South East grinds to a halt?
I was looking forward to the winter and hopefully some good health. I was pleased with my progress. Over the last few weeks I have been getting stronger and stronger, able to increase the distance I walk and not even needing my stick.
Then the snow arrived. Now my legs feel stiff and heavy, my back hurts and even my painkillers aren't providing relief. I can only walk a very short distance. Could this be the MS?
A quick investigation on Google shows that a minority of people with MS are affected by cold weather. It appears I may be one of them. Bugger.
In other news, son 2 is at home, on what should have been his final day of term, as the council has suspended transport. He is not impressed. But I would rather he was here than out on dangerously icy roads. How is it that Scandinavia and even Scotland can deal with snow and ice, while the South East grinds to a halt?
Friday, December 11, 2009
OMG
Can it really be almost two weeks since I wrote here?
I have no excuse other than that I have been busy with various medical appointments, Christmas shopping ( mostly online, but it still takes time) and catching up with old friends. Oh yes, and I had a horrid cold last weekend and was forced to miss Cally Taylor's book launch party, which was very disappointing.
The medical side has brought all good news. My neurologist is pleased with progress and doesn't want to see me for six months. Indeed my legs have been feeling much stronger in the last week, when I haven't needed to use my stick at all. Other potentially scary issues have been addressed and, all in all, I feel I have had a fairly thorough health MOT over the past six months, though I'm still awaiting some blood test results. I hope it won't take another major scare to make me look after myself properly next time, but I am still debating whether I want to have the swine flu vaccine.
Probably coming up soon: my views on The X Factor final and a summary of the year, because I am too lazy to write letters to go with Christmas cards and will direct friends here instead!
I have no excuse other than that I have been busy with various medical appointments, Christmas shopping ( mostly online, but it still takes time) and catching up with old friends. Oh yes, and I had a horrid cold last weekend and was forced to miss Cally Taylor's book launch party, which was very disappointing.
The medical side has brought all good news. My neurologist is pleased with progress and doesn't want to see me for six months. Indeed my legs have been feeling much stronger in the last week, when I haven't needed to use my stick at all. Other potentially scary issues have been addressed and, all in all, I feel I have had a fairly thorough health MOT over the past six months, though I'm still awaiting some blood test results. I hope it won't take another major scare to make me look after myself properly next time, but I am still debating whether I want to have the swine flu vaccine.
Probably coming up soon: my views on The X Factor final and a summary of the year, because I am too lazy to write letters to go with Christmas cards and will direct friends here instead!
Saturday, November 28, 2009
Pacing myself
Today I hit the 70% complete mark on my novel. Now for those of you who know how long I've been trying to write it, that may not seem very impressive. But for me it seemed like a huge milestone.
One of the things I have been most concerned about whilst writing was the pacing of the novel. This is the first time I've attempted a piece of work greater than 4000 words. Although I started off with a rough structure...I knew the beginning, the end and the two main turning points in the middle...I have been having to fill in the gaps as I go along. I prefer to work that way rather than having everything planned chapter by chapter, simply because, as the story progresses, the characters themselves can suggest new routes forward. But in some ways it is also scary, as at times I can't see the way and I get blocked for a while. It also leaves me constantly concerned about the pacing of the story, but I suppose we will only be able to judge if that has worked once I reach the end.
I am also having to learn to pace myself in daily life. One of the impacts of my MS is that I can no longer rush around as I used to. I can still walk, often with the aid of a rather pretty walking stick, but I now find that after a day when I have walked a lot I have to have a quiet day at home. Yesterday I walked a lot, but today, when I went into town as I usually do on a Saturday, my legs and even my arms were quite wobbly. It was lucky that I didn't have much shopping to do, as I spent much of the afternoon recovering in Starbucks with a magazine and a dark cherry mocha. I should have known better than to go out two days in a row...
One of the things I have been most concerned about whilst writing was the pacing of the novel. This is the first time I've attempted a piece of work greater than 4000 words. Although I started off with a rough structure...I knew the beginning, the end and the two main turning points in the middle...I have been having to fill in the gaps as I go along. I prefer to work that way rather than having everything planned chapter by chapter, simply because, as the story progresses, the characters themselves can suggest new routes forward. But in some ways it is also scary, as at times I can't see the way and I get blocked for a while. It also leaves me constantly concerned about the pacing of the story, but I suppose we will only be able to judge if that has worked once I reach the end.
I am also having to learn to pace myself in daily life. One of the impacts of my MS is that I can no longer rush around as I used to. I can still walk, often with the aid of a rather pretty walking stick, but I now find that after a day when I have walked a lot I have to have a quiet day at home. Yesterday I walked a lot, but today, when I went into town as I usually do on a Saturday, my legs and even my arms were quite wobbly. It was lucky that I didn't have much shopping to do, as I spent much of the afternoon recovering in Starbucks with a magazine and a dark cherry mocha. I should have known better than to go out two days in a row...
Saturday, October 10, 2009
Serendipity
I never believed that things happen for a reason. But the way life is going at the moment I might just start to change my mind.
It has been another rollercoaster week. Yesterday Hubby's business formally went into voluntary liquidation and on Thursday he had signed on, a soul-destroying experience in itself. Then last evening I received the best possible news, that my flash fiction piece was one of the winners in the Tonto Books short story competition and will be appearing in the forthcoming anthology Even More Tonto Short Stories.
I have to be honest, I almost didn't enter the Tonto competion. I was aware of it, of course, as it was mentioned on many writers' blogs. I had looked at my meagre amount of unsubmitted work, but I knew Tonto like edgy prose and I didn't think that I had anything which could even be knocked into that shape. I was also entering into my first major MS relapse at the time, looking for a diagnosis and feeling pretty shitty, so I decided to pass on the competition. It wasn't until the end of July, when I heard the deadline had actually been extended by a couple of days, that I suddenly changed my mind.
I sat in a coffee shop and wondered if I could conjure a piece of flash fiction from somewhere. I knew a longer piece would not be completed in time, as I was suffering from very bad double vision due to the MS. But what could I write? I scrolled through my MP3 player and suddenly decided to start a series of flash fiction pieces based on old song titles. I listed a few possibilities in my notebook. Then I went home and started to write. Two days later, on the competition closing date, I submitted 500 words to Tonto. I had little hope of success and was feeling rather guilty about paying an entry fee knowing our financial circumstances were about to change (though the fee was only to actually purchase the book, so was entirely justifiable!)
I wonder why that particular piece succeeded? Perhaps it was because I wrote it very quickly and didn't have time to edit to death. Perhaps some extra depth came out of being very ill at the time of writing. But most likely it was just luck, that my piece appealed to the judge in some way and worked well alongside others selected. I'll never know, of course. I guess it is a lesson that we have to learn as writers, that there can be so many almost random reasons for success or rejection. I guess too that is why we need to grow thick skins.
Right now I feel as if the parts of our lives have been thrown up into the air and we are just waiting to see how they will land. It is scary but at the same time exciting, and as the Tonto result shows, anything might happen. Perhaps it is all for an as yet unknown reason.
It has been another rollercoaster week. Yesterday Hubby's business formally went into voluntary liquidation and on Thursday he had signed on, a soul-destroying experience in itself. Then last evening I received the best possible news, that my flash fiction piece was one of the winners in the Tonto Books short story competition and will be appearing in the forthcoming anthology Even More Tonto Short Stories.
I have to be honest, I almost didn't enter the Tonto competion. I was aware of it, of course, as it was mentioned on many writers' blogs. I had looked at my meagre amount of unsubmitted work, but I knew Tonto like edgy prose and I didn't think that I had anything which could even be knocked into that shape. I was also entering into my first major MS relapse at the time, looking for a diagnosis and feeling pretty shitty, so I decided to pass on the competition. It wasn't until the end of July, when I heard the deadline had actually been extended by a couple of days, that I suddenly changed my mind.
I sat in a coffee shop and wondered if I could conjure a piece of flash fiction from somewhere. I knew a longer piece would not be completed in time, as I was suffering from very bad double vision due to the MS. But what could I write? I scrolled through my MP3 player and suddenly decided to start a series of flash fiction pieces based on old song titles. I listed a few possibilities in my notebook. Then I went home and started to write. Two days later, on the competition closing date, I submitted 500 words to Tonto. I had little hope of success and was feeling rather guilty about paying an entry fee knowing our financial circumstances were about to change (though the fee was only to actually purchase the book, so was entirely justifiable!)
I wonder why that particular piece succeeded? Perhaps it was because I wrote it very quickly and didn't have time to edit to death. Perhaps some extra depth came out of being very ill at the time of writing. But most likely it was just luck, that my piece appealed to the judge in some way and worked well alongside others selected. I'll never know, of course. I guess it is a lesson that we have to learn as writers, that there can be so many almost random reasons for success or rejection. I guess too that is why we need to grow thick skins.
Right now I feel as if the parts of our lives have been thrown up into the air and we are just waiting to see how they will land. It is scary but at the same time exciting, and as the Tonto result shows, anything might happen. Perhaps it is all for an as yet unknown reason.
Tuesday, September 01, 2009
September comes...
The new month begins and school is back tomorrow. It's been a strange holiday as I've not been able to do much due to my MS relapse, which thankfully seems now to have almost resolved. Inspired by his brother, son 2 decided to listen to his mp3 player for the first time ever, which has been a godsend. It's not an iPod but a cheap kids' player I got on eBay, a tiny capacity but seemingly sturdy, which is very important.
I've spent the last two days working. Due to my bad back I should only sit at my desk for short periods of time and by the end of yesterday I was in a lot pain. I've no idea whether the back pain which affects my mobility is part of the MS, but I've decided I must get back to doing yoga regularly, as that used to help a lot.
When I had a gym membership I used to do hatha yoga classes twice a week, with a lovely teacher whose gentle approach was suitable for all. I had to give up my gym membership when I became unable to get there due to family illness and sadly now I can't afford to rejoin. In the past I've bought yoga dvds but found it difficult to practice when it is necessary to look at the screen and so I lazily let my yoga slip. A bad mistake, I fear.
But now I think I've found the answer, yoga mp3s from Yoga2hear, which are also available via Audible. The narrator, Sue Fuller sounds very like my old teacher and the beginner classes I've sampled so far seem to use a similar gentle approach. I'm going to get a few more over the coming months and then I should have enough for a varied home yoga practice. I hope my back appreciates it.
I've spent the last two days working. Due to my bad back I should only sit at my desk for short periods of time and by the end of yesterday I was in a lot pain. I've no idea whether the back pain which affects my mobility is part of the MS, but I've decided I must get back to doing yoga regularly, as that used to help a lot.
When I had a gym membership I used to do hatha yoga classes twice a week, with a lovely teacher whose gentle approach was suitable for all. I had to give up my gym membership when I became unable to get there due to family illness and sadly now I can't afford to rejoin. In the past I've bought yoga dvds but found it difficult to practice when it is necessary to look at the screen and so I lazily let my yoga slip. A bad mistake, I fear.
But now I think I've found the answer, yoga mp3s from Yoga2hear, which are also available via Audible. The narrator, Sue Fuller sounds very like my old teacher and the beginner classes I've sampled so far seem to use a similar gentle approach. I'm going to get a few more over the coming months and then I should have enough for a varied home yoga practice. I hope my back appreciates it.
Friday, August 07, 2009
Bad times, good times
The bad news first.
A week ago I was diagnosed with multiple sclerosis, an incurable condition with an uncertain progression and prognosis. It wasn't a surprise. I have been feeling 'not quite right' for maybe eight years, have had various tests, with minor symptoms being attributed to stress or the side effects of drugs. All of this seemed perfectly reasonable at the time, I have no complaints about my medical treatment. But this time I had tingling in my face, my GP suspected MS, was honest enough to say so and refer me on. That was at the end of June.
After a more recent week-long convoluted story involving two hospital A&E departments and an MRI scanner, my consultant neurologist broke the news. I was just thankful it wasn't a brain tumour, which was the other possibility. At the moment I have severe double vision, because the muscles in my eyes are not working together. I can't drive, I'm walking with a stick, feeling very weak and wobbly, and I need patched glasses just to function. I know this is just a bad relapse, part and parcel of MS. I am already better than I was, it should all improve further with time.
But all this was forgotten yesterday when my Open University results came out. I got the grade I had hoped for in my Advanced Creative Writing course, not a distinction but the next best thing. As a result I am now the proud owner of a Diploma in Literature and Creative Writing, as well as an Open Degree with 2.1 Honours ( due to the eclectic mix of courses I have studied I can take this as either a BA or BSc. I think I will go for the BSc, despite the strong creative writing content, as I already have a BA!)
There is a wonderful symmetry here. I initially joined the OU ten years ago to study one course in Health and Social Care, in order to better understand the systems we would be fighting because of son 2's autism. I had no intention of going on to do another degree, but due to my kids' special needs over the last four years I found myself stuck at home with a need for distraction from a lot of stress. I went back to the OU and found a new direction and validation with the OU creative writing courses, making a dream into a reality. I have learned so many practical writing skills, I have been published and I will continue writing, not just as a means of one day hopefully perhaps making a little pocket money, but above all to enjoy a 'career' which can fit around not only my role as a carer but now also my own future health needs.
I hope the best is yet to come.
A week ago I was diagnosed with multiple sclerosis, an incurable condition with an uncertain progression and prognosis. It wasn't a surprise. I have been feeling 'not quite right' for maybe eight years, have had various tests, with minor symptoms being attributed to stress or the side effects of drugs. All of this seemed perfectly reasonable at the time, I have no complaints about my medical treatment. But this time I had tingling in my face, my GP suspected MS, was honest enough to say so and refer me on. That was at the end of June.
After a more recent week-long convoluted story involving two hospital A&E departments and an MRI scanner, my consultant neurologist broke the news. I was just thankful it wasn't a brain tumour, which was the other possibility. At the moment I have severe double vision, because the muscles in my eyes are not working together. I can't drive, I'm walking with a stick, feeling very weak and wobbly, and I need patched glasses just to function. I know this is just a bad relapse, part and parcel of MS. I am already better than I was, it should all improve further with time.
But all this was forgotten yesterday when my Open University results came out. I got the grade I had hoped for in my Advanced Creative Writing course, not a distinction but the next best thing. As a result I am now the proud owner of a Diploma in Literature and Creative Writing, as well as an Open Degree with 2.1 Honours ( due to the eclectic mix of courses I have studied I can take this as either a BA or BSc. I think I will go for the BSc, despite the strong creative writing content, as I already have a BA!)
There is a wonderful symmetry here. I initially joined the OU ten years ago to study one course in Health and Social Care, in order to better understand the systems we would be fighting because of son 2's autism. I had no intention of going on to do another degree, but due to my kids' special needs over the last four years I found myself stuck at home with a need for distraction from a lot of stress. I went back to the OU and found a new direction and validation with the OU creative writing courses, making a dream into a reality. I have learned so many practical writing skills, I have been published and I will continue writing, not just as a means of one day hopefully perhaps making a little pocket money, but above all to enjoy a 'career' which can fit around not only my role as a carer but now also my own future health needs.
I hope the best is yet to come.
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