Thursday, 17 November 2011

the Christmas challenge....

I've found Christmas dinner.....

Tuesday, 27 September 2011

where I need to be is exactly where I am

Eight months since the relapse started. Feeling fairly ok... I've been enjoying sleeping lots over the summer break (I'm a note-taker at university, so have very long summer holidays (unpaid, unfortunately!)...I think that's a good thing. Plenty of downtime for me to set to healing myself. I'm getting snatched moments of nearly-normal, just here and there...every now and then, for about five minutes at a time, my legs feel almost normal. It's a lovely thing! My big toes are still fuzzy throughout, and little patches on my legs remain fuzzy too, but it's an encouraging development. The MS nurses said it was likely to plateau at some stage and then very slowly heal for the last bit. They also said I shouldn't give up on getting back to normal for up to 12-18 months after the I'm feeling really encouraged. It's also been quite a while since I became a Jelinek Swanker! Maybe, possibly, some of the many positive changes that I've embarked on are beginning to help a little... My energy levels are still pretty crap, but I'm coping ok..trying to remain well hydrated, as this helps fatigue levels apparently.... I am learning so much about the desecrated temple that is my body! I've never taken so much interest in human bodies before (well not the insides anyway!) It's all good stuff though, and although I still get bluesy mood swings sometimes (possibly a symptom of the MS, or perhaps its just being a mardy cow!) I'm feeling like I'm winning.....not being cocky about it, I know I've got a long and tricky stretch ahead, but at least now I feel like I have a toolkit and a roadmap to get me where I need to be (which, cryptically, is exactly where I am!) I had my vitamin D levels tested at the GP (who looked a little bemused and said he wasn't sure I'd get it on the NHS). When I got the results back, it showed my levels to be at 55mg/l. This is only just within normal range, and very much lower than the level recommended by the recovery program I'm following (Jelinek), and this is not even a base level, as I'd already started on high dose vitamin probably was deficient, especially as it's summer now, and although not a scorcher, I have been consciously getting as much sun as possible, on top of the vitamin D supplements. Starting back at work soon, possibly by the end of the week (not sure of my timetable yet). I'm going to go for the maximum number of hours I can get this term. I think I'll be ok for working now. I'll be quite glad to get some structure back in my week to be honest. I think I've slept enough now...need to invigorate myself with work and exercise... x

Monday, 29 August 2011

bring me sunshine...

In a much better place than my previous post! Not finished my kitchen yet...stopped beating myself up about it and got out and partied more! It was my birthday at the weekend, and was playing a gig at a wedding/festi style party on Saturday..had a great night and a lot of dancing (I found a hay bale to recline on whilst dancing to save my poor tired legs!). My birthday week had started with a gig at a friends party/ barbeque followed by a sunny outdoor jacuzzi with friends the next morning. I have to say now, outdoor jacuzzis in the sunshine should be a prescribed therapy for people with ms! it was pure bliss! I could have stayed in there until I dissolved clean away!
I also had a meal at the sushi bar with a group of friends...splendid stuff! loads I could eat - even my vegan friends seemed to be heartily catered for. I bit the bullet and tried some raw fish sushi - it was really nice. I'll be more adventurous next fact me and my son have decided to take up the challenge of trying everything on the menu (within restrictions of my diet!)..these includes things with tentacles! eek! Every time we visit the sushi bar, we'll share the next thing on our menu tick-list (to avoid trying to woose out of the scarier ones!)
So basically I took my own advice and got out and got a life! I guess I needed a few weeks of cloistering just to get to grips with my life-changing programme that I'm embarking upon.
I think at this point I should just recap briefly what my programme is, as it's the most positive thing I've come across since diagnosis, and I am launching myself wholeheartedly into it..
these are the changes I've so far achieved...

* no red meat or dairy (including goat's milk etc)
* occasional bit of skinless chicken breast as a treat
* virtually no saturated fats, including coconut, palm oil and egg yolk
* only extra-virgin olive oil for cooking

supplements: 20 x 1000mg fish oil capsules, just over 5000IU vitamin D3 (13 capsules), and 1 capsule of Glucosamine capsule (can't remember the strength offhand)

exercise: I've been making a start with organised exercise - ridden my bike round the block (It's quite a big block, with hills!), gone swimming, danced, used my son's weights (little dumb bells) as well as doing the exercises given to me by the physiotherapist

meditation: I'm starting to get the hang of it, but not doing the prescribed amount yet even when I remember to do it

sun exposure - I'm supposed to have 1/2 hour full sun exposure on bare skin each day...I live in Wales! fat chance, so I'm overdosing on vit D as a replacement (avoiding the capsules that have added calcium)

....all I need to do now is throw myself into making these things a routine. It's hard going! The diet was my first objective, then supplementation...both of these are kinda sorted now - though re-learning to cook is an ongoing voyage of discovery all on it's own!...but I'm not beating myself up about how long it's taking me to make all the changes I'm committing myself to.

So..getting healthier, feeling much happier....I think I might possibly have had a little relapse - my left thigh was really burning for a couple of days, and my legs feel quite numb-skinned (can't feel pricking of self administered pointy thing). It could just be that I've been overdoing it, mixed with it being my period - seems pretty likely, but if it is the beginning of another relapse, then hopefully it'll be a little bit easier on my body now I'm super-charging my cells with all the right fuel - for the first time in my life!...we shall see, though I'm not really expecting to see any real benefit for at least 9 months- 1's a long-haul journey!


Saturday, 30 July 2011

Still keeping up with the diet change. I have started to really crave oily fish. I think I've eaten that much fish recently that my body has adapted to recognising it as my main source of protein and triggered my fishy cravings. At the moment, my staple diet is breakfast of soya yoghurt with a piece of fruit cut into it, and around 15g milled linseeds and a few sunflower seeds. For tea, I've been having quite a lot of polenta, with dry-griddled oily fish with a fresh picked garden salad. I'm still experimenting with snacks - today I am going to cook a plum cobbler! We were given a box (about 5lbs) of damsons, and the natural response was to make crumble...d'uh! ...can't make crumble without fat! I did some research and have found a recipe which is both vegan and fat free...BINGO! plum cobbler! - so I carefully de-stoned nearly the lot of them whilst watching a film last night, and now have go over the most laborious part of making a plum pudding! We also experimented yesterday with homemade sushi, though my son was the only one who wanted to try the raw fish - he liked it though. We stuck with vegetables and cooked prawns! It got me thinking though, we have a sushi bar in our nearest town, and I think that sushi is pretty much based around stuff I can eat (if I avoid stuff like tempurah etc)...hmmm ...maybe I shall go there for my birthday (it's a whole month away, but you've got to allow time to plan such things!)

Cooking aside, I've had this creeping feeling of isolation recently. I think I need to do something about it before it becomes a real problem. I've found myself in a social doldrum..I think it's partly that I get fatigued so quickly that I've shied away from going places where it's mostly dancing. It seems a bit pointless going unless you want to dance cos you can't usually hold a conversation unless you want to shout, which I don't! And then there's the fact that I'd probably have to stay sober and drive home which puts me off - I still feel like I could end up stuck somewhere because my legs are too tired to drive.
I need to resolve to get out more, but to be honest, I'm just so tired, I barely get through the things I have to do. So my plan is to finish decorating my kitchen and start inviting some of the friends who seem to have drifted out of my reach to come to tea...


Thursday, 14 July 2011

no chocolate...ever

I found this website yesterday...against the advice of my MS nurse who said I should only look at the MS Society and the MS Trust websites...

from what I've seen so far, it seems to be quite well presented. I am so far impressed that they are at least trying to find scientific evidence for the things they say. It is very much based on dietary changes, which is what I'm most interested in at the moment. It just seem to make a lot of sense. The downside is it suggests even more restrictions to my diet... no coconut milk or chocolate (although I can still use cocoa in cooking so not too devastating), only egg whites are allowed, avoidance of cooked fats -so no deep fried stuff. It's all good healthy changes that everyone should consider, made all the easier with the thought that it might help reduce the occurrence/severity of relapses. Another thing I'm going to try to change is I want to start taking fish oil capsules. I haven't quite go my head round what dose to go for yet, but this website recommends quite a huge dose. They say to stick with fish oil for a time, then flax seed oil can substitute for the fish oil once your system is well greased with the right lubricant! Basically it's to do with leaky membranes and fats that stay hard at body temperature. I think I need to reread the science bit to really understand it, but it resonated as I read it yesterday. It also recommends exercise, meditation and regular sunshine.
It feels like a really positive step to take - something I can take control of and usefully DO something about...

Tuesday, 12 July 2011

who needs cheese?

well my arms feel a little better now, but my shoulders are paining me, especially my right shoulder. I don't know if it's the MS or just muscle strain from grinding all them lovely seeds with a pestle and mortar, but sometimes the pain takes my breath away. Luckily it's only twinges, and luckily it's generally only when I'm resting that it plays up. There is also a numb spot on the top of my right shoulder that I've become aware of over the last few days..only a small patch, but it does feel like nerve damage to me..can't feel any sharp sensation there. Hey ho, just thought I'd mention it here in case I want to remember when my dodgy shoulders were bad at some point in the future.
I've been feeling quite low, emotionally, recently. I think this might have something to do with my achy shoulders, and the ongoing fatigue. That really gets to me sometimes. It' so damned frustrating! I have taken it into my silly head to redecorate the kitchen now that I'm mostly better. This is a job that is long overdue and that has been shelved since my first big relapse a year ago. I have decided that what I really need to maintain my new healthy diet is a pleasant environment in which to prepare my nutritious yet savoury offerings. It actually sounds like quite a reasonable idea...on paper! Our kitchen is very old and damp and in need of professional attention. What it has is me...enthusiastic as f***, but with the physical tenacity of an 80 year old! An interesting and exhausting combination! I am taking it as easy as I can tolerate, but it is happening so slowly. It is, in one way, encouraging and empowering to be getting up and doing something really constructive that will improve my daily life, but on the other hand it serves as a constant reminder of my acquired frailty; my 80-year-old's arms shake with the effort of trying to get screws out of the walls - I had to stop that for fear that my arms would yield before the screws did!
The dietary changes are going well. I'm quite enjoying the challenge. Today we all had pizza for supper. The rest of the family had regular pizzas, and I made myself a lovely dairy free version. I overdid the anchovies and chillies a little, but with a bit of tweaking I think I could be onto a winner! Here's the toppings I used...

tomato paste
polenta slices
lots of shredded spinach, washed
jalapeno peppers
fresh basil
olive oil drizzled on top

ok, it was a bit of a jumble sale of toppings, but very tasty and definitely worth repeating the experiment. I think the polenta worked really well in conjunction with the spinach as a substitute for cheese..the spinach goes all soft and moist, whereas the polenta maintains its soft firm texture - both have a mild, unassuming flavour that went really well with the more forceful flavours of anchovies, capers etc.

I also tried out the dairy free Benecol live yoghurt drink, as the shop had run out of Alpro Soya live yoghurt...I was impressed that they offered a dairy free version of the little yoghurty health fix, but it was absolutely disgusting! I think if they run out of Alpro Soya yoghurt again I would be tempted over to the Dark Side and eat cow yoghurt as a one off!

another thing that I've enjoyed making recently is good old fashioned soya cheese, a recipe passed onto me in a squat in Westcliff-on-Sea many many moons ago...

Soya cheese

dairy free margarine
soya flour
yeast extract

melt some margarine in a pan
stir in enough soya flour to make quite a thick paste
add a bit of yeast extract
mix together, put into an old washed out margarine tub, label it "soya cheese" and put in the fridge. After a while it gets a really good crumbly spreadable texture and is divine on toast, in sandwiches or wraps etc.

it's lovely, easy to knock up and keeps for a few days...


Monday, 4 July 2011

contemplating independence

well it's been a tough but productive time since my last blog. I saw the MS nurse team. They were, as anticipated, the most clued-up and approachable face of the NHS to date regarding my MS. I now have a number for their bat-phone, so can now have some advice and support when I actually need it (assuming that I will need them in the future sometime!).
Symptom-wise, I'm not feeling so brilliant. I'm not sure if it IS the MS, but my arms are killing me. To the point of wanting to just strap them down to my body so I don't even have to use the muscles to hold them in place. As I'm typing now, it's paining my biceps, which in turn is making my fingers move lazily, like the tendons are affected or something (many careless typos later!), and my right shoulder has kept me awake at night for the last couple of night with some searing throbs. I will give it a week and see if it starts to clear up before I dial up the bat-phone!

On a positive note, I've at last got around to approaching the thorny issue of diet-change. I've been trying, but not really, to change my diet to a more MS-friendly version, but something clicked inside me about a week ago, and I have finally thrown myself into it wholeheartedly and hopefully permanently.
I have to declare now, I hate diets! I have the wrong personality to adhere to such nonsense generally - if it involves will-power then count me out! But,though I say that flippantly, I am not so silly as all that, and am prepared to give it a go - it's a healthier diet than my previous one...which I would say was healthy-ish, but too much convenience stuff if I was entirely honest with myself!
So the regime I have imposed upon myself, after some research (though not yet exhaustive), is this...
Absolutely no red meat or dairy products. At the moment I'm eating stuff with eggs in sometimes, but that's subject to review. I am eating fish pretty much every day, and trying to eat green leafy stuff twice a day (plus all the usual 5-a-day malarkey). Where possible I'll have the green leafy stuff with a little olive oil dressing, as this helps absorb the green leafy nutrients apparently. I am also increasing my seed intake - linseed, hemp seeds, sunflower and sesame seeds are used as much as I can squeeze into a dish. I've been baking healthy option snacks, which are delicious and taste even better thinking it might be benefiting my body...though that's possibly the root of my poor arms. We use a pestle and mortar to grind our seeds, and we have a hand-cranked coffee grinder....hmm! I might need a more sustainable approach to grinding seeds!

So it's all good really, the garden is looking lovely, the sun is shining and life is pretty damn good. We had a hectic weekend of puppet shows and open air gigs, and by Sunday night I was absolutely shattered. I felt very smug on Saturday when the school we were puppet-showing at provided us a lunch of ham rolls and cakes and sausage rolls...I had a salad wrap with soya cheese out in the sunshine instead, washed down with hand-ground coffee and my home-made apple and cinnamon flapjacks (I will most definitely make these again - in fact, I shall dig out the recipe and post it here - even if no-one else ever reads my blog, I will at least know where to find the recipe next time I'm baking!) :)

(I swapped the sunflower seeds for linseeds. If I hadn't run out of sunflower seeds, I would have put them in as well!)


Wednesday, 15 June 2011


it's been nearly 5 months since the beginning of this relapse. I'm gradually coming to the conclusion that I might have healed as much as I'm going to...that thought makes me feel depressed, so I can only visit it for short bursts...after all, I might yet get through this unscathed, but the longer it goes on, the more I feel like I'm crossing the line between positive thinking and denial!
Currently, my body is aching most of the time, probably because I'm demanding it does more and carries on regardless...but I do think I've got to use it or lose it, so I'll be damned if I'm going to just wait in bed til the relapse passes!...well not all of the time!
I've been given the all clear by the physiotherapist, with exercises to do...which I'm trying to keep up! I have my first meeting with the MS nurse on Friday..happy days!..I'm looking forward to this..I kind of don't need them as much as I have done over these last 5 months, but actually, at the tail end of the relapse, it might be a good time for a fresh outlook...


Monday, 25 April 2011

a matter of perspective

I met a lady whilst wobbling about on uneven ground. She was similarly wobbling. It led to a conversation about the reasons for our wobbles. When I mentioned the MS, she responded by saying "oh poor you! I only have osteoarthritis". I would have thought the same about her if she'd have told me first about the osteoarthritis..that's actual proper pain...poor her!

just goes to show it's all about the view from where you stand (or wobble!)


Sunday, 3 April 2011

look at me I'm dancing!!

another milestone! - I was playing a gig list night, at a masked ball. Had a great gig, but that's digressing from this thread!..the point is that afterwards there was bouncy music, and without realising, I found myself on the dance floor pulling shapes! - I did actually come out with something like "look I'm dancing!" . Naturally I thoroughly overdid it and danced the night away. I had an hour and a half drive before I could get horizontal, which I was acutely aware of and trying my best to respect, but I was overcome with the joy of legs, so not much chance of taking it easy. The DJ was no blinking help either. I did have a couple of valiant stabs at sitting down, but then he'd stick on some juicy tune that I couldn't resist (will power is not on my top list of virtues!). I knew that my night of wild and loony dancing would have to be paid for today, but there was no question that it was worth paying the price...yes, my legs are knackered today, but my heart is still bursting with the simple joy of having it in me to dance again!...that means more to me than I thought; I was welling up (ok - spilling over a little) just recounting that!

dance while you can...


Wednesday, 23 March 2011

mrs Lightfoot

legs almost there now. Still a bit heavy, and my feet still a bit fuzzy. Got my appointment with the neurologist tomorrow morning. I'm looking forward to getting the ball rolling with that....

that is all


Saturday, 19 March 2011

a spring in my tail...

Two months now since the beginning of the meltdown.... Legs still a bit fizzy, feet now feel like they have thick felt glued to the soles where previously it was tar!
I would say I'm 85-90% better. I went for a walk/scramble in some steep woods today, in one of the first warm springy day we've had this year. Sun's shining, sap's rising and my legs can feel it. I can't wait to get back on form...I can feel now that every day I'm just a little bit better.
I have a neurologist appointment on Thursday - first one since being diagnosed. At last! - ironic that it's just at the tail end of the relapse. But it's a good thing; it means I'll be in the loop with all the medical stuff...

Sunday, 6 March 2011

tapping and fainting

an interesting twenty four hours... a friend of mine is learning a method of doing healing through mental imagery and tapping acupressure points. I can't remember exactly what it's called, but she refers to it mostly as "tapping". I agreed to be a guinea pig, as she needs to get some case studies under her belt. We had our first session together last night. We had a brief interview style discussion to begin with, so she could get to know what really gets to me about the MS, and to focus on my fears and frustrations. Then she got me to repeat what she said whilst tapping a series of pressure points. The phrases first used were very negative, such as "these damn feet feel coated in tar", but then went on to things like "even though my feet feel like they're coated in tar, I completely love and respect myself".
There was a bit more detail than that, but that's the gist. When I first started tapping, the base of my cranium suddenly felt really warm, and as it progressed I felt quite flushed, and as we moved towards the more positive statements, I started to feel quite euphoric. There was a point during the process, where you focus on your fears, and repeating the phrase "what if this is it?" made me feel like I was going to cry! That's not unusual at this stage, apparently. I think if I had done this exercise three weeks ago I would have been howling at that point; that's why I think that I was so euphoric - I felt the emotional response rise in me, but I found myself resilient, and it said to me that I really have reached a point of resigned acceptance of my lot!
I don't think I showed much in the way of any physical benefits/changes from this first session, though I think she's planning to dig a little deeper next time (I am a tough nut to crack!).
Interestingly, and quite alarmingly,I fainted on the night I did the tapping, several hours after. I had a bit of a headache when I went for the tapping, it cleared up whilst we were doing it, but then came back later so I went to bed. I woke up in the night feeling really thirsty. I went to the loo, had a drink, then went for a wee. As I sat on the loo I could feel myself starting to have a whitey...I was nauseous, my head was spinning, I felt really disorientated, my heart was racing. It was quite scary, I hadn't been drinking or anything, and I'm not on any meds, but it felt like I was really out of it. I eventually got it together to grab a pukey bowl and head back to bed when I must have very briefly fainted. I was conscious again by the time I hit the floor 'cause I remember the loud thud and wondering why I had fallen over. I was very lucky! we have a tiny bathroom and I fell towards the sink, with only about 2ft between the sink and the door...I don't think I got one bruise to show for it though! graceful or what?!
When my husband heard the bang he came running, and was knocking at the door straight away. I hauled myself up to a sprawled sitting position and unlocked the door. Somehow he managed to squeeze into the bathroom to rescue me and get me to bed.

Now I am not ascribing this episode to anything in particular. But I have never fainted before in my life, and I have had many whiteys, for one reason and another. But it is an interesting coincidence that I had my first tapping session on that day...and the lady who led the session with me asked me to let her know of any perceived effects...hmm!

Saturday, 5 March 2011

a nervous itch

well, the experimental med-free thing seems to be going well. I can't honestly say I'm feeling a whole lot worse without, so I have no immediate plans to get back on them. The bonus plus side is that I could share a bottle of beer last night...oh the joy!
The only development in symptoms I've had since my last post is the development of an infuriating (but occasional) itch around my hip area. It occurred before I finished taking the meds, so I doubt it is withdrawal symptoms (although that can be one of the symptoms). It's an annoying one; if you try to scratch the itch it moves deeper in and becomes an internal tickle...confirms to me that it's definitely a neuro thing, rather than skin.
Yesterday I invested in my resolve to sort out a fitness programme, I bought myself a swimming costume, and today I'm going to find out what aqua-fitness courses they run in the area. I'm actually really looking forward to it, and even dreamed I was doing aerobics at the bus stop last night!


Thursday, 3 March 2011

testing times

my Baclofen tablets (anti spaz tabs) ran out just over 24 hours ago. I have a fresh supply, but I plan to take a holiday from them. So far, my legs are still attached and working. Stiffer than yesterday, but bearable so far - though I've not been further than the kitchen yet! Today is quite a testing day on my legs. I need to walk the dog before work, then I have a four hour block of lectures to sit through, and then a walk up the hill to meet no. 1 son to take him for dinner. oh and it's referendum day today, so I guess a trip to the polling station too, after work.
I asked the doctor yesterday if there had been any progress in getting to see a neurologist or an MS nurse.There hasn't been so much as an acknowledgement slip in over a month since my GP wrote and requested an appointment. He said the system was really bad, and the waiting list for a neurologist is very long. I thought six months with no contact was already quite a long time! So he wrote another's not in my nature to nag people and be a thorn in people's sides, but I've been told it's the only way to actually get noticed by the NHS...we'll see! I can't help suspecting that if I was in the affluent South, I would be on first name terms with my neurologist by now!

Sunday, 27 February 2011

use a stick when your spider-legs feel sick

So I'm now coming up for two months since the beginning of the current relapse, and things are still not back to normal. My legs are less uncomfortable now, but overall I would say they feel weak, wobbly and tired. When I wake up, and in the evenings, or when I've been over doing things, my legs start to feel tight (my "invisible stockings" go back on!), and sometimes they feel sick! - that's a tricky one to explain, but imagine the feeling you get in the pit of your stomach just before you're sick? well that's how it feels in my legs! Sometimes, when the invisible stockings have done their worst, my legs just want to curl up under me and it brings to mind how the legs of a dead spider curl up; but spider-legs don't give such an attractive and upbeat spin on things as invisible stockings, so 'll just leave that one right there!
I have recently bought myself a stick to help me keep my balance, as I continue to walk like a drunkard. It's quite odd. It feels a bit like coming out! Suddenly people are aware that something is going on with my legs, and it's led to many conversations..I don't mean to be churlish, I know it's cos they care, but sometimes I don't feel much like going over it again. But talking to people about it is better than getting the sad, sympathetic smile from people...that just pisses me off!
I think I'm getting my own head round things more now. I know that I resisted using a stick for too long because I was in denial about needing one, and it felt like a big thing to actually be seen using one. I think it was an important part of my acceptance of the MS. To recognise that my mobility is impaired and rather than seeing it as accepting defeat, seeing it as taking a positive approach to dealing with the challenges my body throws at me.
I am going to have a medicine holiday on Tuesday, for two days. I'm on prescription anti-spaz tabs which run out on Tuesday, but I next have a docs appointment on Thursday, so I'll go cold turkey for a couple of days to guage where my body is at when left to fend for will be interesting if only to see how effective the anti-spaz tabs actually are, as when I first went on them I had only been relapsed for a week and the full tidal wave hadn't really hit me yet.


Sunday, 13 February 2011

the feeling of feet

I think I've turned a corner of the relapse I've been experiencing in the last couple of days. My legs have started to come back a little here and there. Last night, however, I overdid it a bit. I went to the theatre, and lasted, only just, until the interval. My legs were so cramped up I could barely walk up the stairs to get out of the auditorium. That doesn't sound a whole lot better, I guess! I decided to not go back in for the second half. Though the play was good, I had really spent the best part of it hoping each scene was the last, and nearly crying with relief when the lights went up!
We were off to a friend's party after the play. The plan was to catch the bus and then walk the last kilometre to the house...what had I been thinking? By the time I escaped the theatre, the thought of a long walk in the cold and dark to find a house in a country lane that I'd never been to was daunting! Luckily, because I had left the theatre an hour early, I was just in time to catch a lift with a friend (with a small, but hugely appreciated detour to come and fetch us!) The rest of the night was lovely, but was spread over three floors which I found hugely knackering, so I didn't mingle as much as I might have done. But despite that, and the lack of alcohol due to the meds, I was still up chatting 'til about 7am!...I never expected to last that long!
I met a nice bloke who I thought was very inspiring. He only had one leg, and chose not to use a prosthetic limb. He said it slowed him down, especially at parties and outdoors etc, where the terrain is not flat. He was much more agile than me!, nimbly hopping over obstacles where I would need to clutch things/people to steady myself. He was telling me that, although it's been many years since he lost his leg, his body still occasionally forgets it's not there and causes him to fall after trying to use it. Well it struck me that I am labouring with the opposite conditions: I have perfectly working feet which I can't feel, and the irony wasn't lost on me of who was coping better!


Wednesday, 9 February 2011

belly dance therapy!

I am very excited about starting belly dancing again. I had a thought that belly dancing should be therapeutic for my condition right now, as well as a way to gently exercise my body and regain some degree of balance and body awareness. Well, I looked into it on the web, and it seems it's tried and tested and seems to work well...

..I do believe that we instinctively know what's best for us if we listen carefully to ourselves. I had decided to up my oily fish intake on a hunch, and have since read that omega 3 acids are an important part of an ms "sufferer's" diet. I use the quotation marks as I'm still deciding how I choose to define myself, but you can be assured, "sufferer" will not appear in the title! That is a decision we are all free to make. I am inspired and encouraged by the words of my elderly grandma who, on experiencing an odd spots-before-the-eyes episode, instead of worrying about her inevitable decline, merely remarked how interesting it was as it was an experience she had never had before!'ve got to love my nan!

Another website that I found had ms specific gifts, with exactly the teeshirt I said I needed whilst stumbling along a public place the other day...

Tuesday, 8 February 2011

don't look at the mountains!

It has now been 17 days since I had this relapse, plenty of time to get to grips with all the nuances of this bout's symptoms. So, for the record, I'll recap on the status quo with my short-circuited body: from the hips down I am numb, and tingly, but at the same time my skin is hypersensitive to temperature and direct touch. My feet feel like lead balloons, and about twice as big as they should be, and my bum feels twice the size it really is. I have been feeling quite emotional and tired too, but that could be the drugs.
Talking of the drugs..I went to see the GP to stamp my heavy feet and make a fuss about getting to see a neurologist/MS nurse (ended up bursting into tears in her office! - bloody girl that I am!). She was appalled that I had fallen through the net and said to leave it with her (a phrase that, in the NHS, I believe means they are about to file your notes in the bin!). She also prescribed me some kick-ass tablets to make my legs ache less ("Baclofen"). There are quite a few side effects stated on the leaflet, including tiredness, depression, hallucinations and, best of all, overexcitedness! I have no idea if I've had any of these, though I did have a strong urge a few days ago to run on the spot (overexcited?).
I wish I had recorded the last relapse in as much detail as this, it would have helped now to guage if this one is worse. I can hardly remember how it really was now, but I have a feeling this is a more severe relapse, but it might just be that the last relapse was during the university summer break, so I wasn't having to work through it.
The work thing is really taking it out of me this time, and I have had to turn down some jobs
(as a disability support worker) due to mobility issues (like not standing a chance of getting across campus in 10 minutes at the moment)! Sitting down for one or two hours at a time is also quite painful for my poor fuzzy bum. It crossed my mind for the first time recently that there may come a time that I will have to give the job up if my symptoms become more full-on than they are now. But it's not a thought to dwell on...
This is something I have resolved to do: I will not linger in the realm of "what may happen", the most positive way to deal with this is to take each day as it comes. That is quite enough to manage in one lump! I'm not sticking my head back into the sand; I am still educating myself about my disease, but I will not let the shadow of fear hang over me. It is a rocky enough path as it is without looking at the mountains on the horizon!
I am wondering if I might be starting to get a little better...I noticed a new sensation last night, the backs of my legs feel wet! They aren't wet (I have to keep checking!), but hopefully its a sign that my neurons are starting to reboot....we'll see!


Sunday, 30 January 2011

Sack the electrician

My myalin sheaths are in meltdown! The insulating sheath around the wiring of my nerves is sloughing off, apparently due to some little bit of cross wiring that means my immune system believes them to be invading pathogens!
Good insulation is the cornerstone of every functional and user-friendly electrical device, which includes the nervous system of the body. The effects of this are, so far, strange sudden and unexpected in nature. Sometimes uncomfortable and often quite funny (in a slapstick way), but also, in the still of the night, sometimes ominous.
The purpose of this blog isn't for me to bleat about the unfairness of life etc, but born through a desire to document the progress of my journey.
The current state of play is that I am on day 7 of my current relapse. The last one I had was about 10 months ago. Both relapses have presented similar symptoms: waist down pins and needles, legs heavy and stiff, not much feeling in the feet (leading to most of the slapstick incidents!). So not so bad. Trouble is I am a curious soul with internet access, so naturally I have thoroughly freaked myself out with all the possible directions that MS can eventually take. And it can meander through some dark and scary places. One of the things that has most recently freaked the crap out of me is the possibility that it will render my diaphragm weakened and unable to find a pitch when singing...that is too horrible to think about (unlike loss of mobility, continence, sexual health, swallowing, cognitive ability..oh and dignity)!
I turned 40 last birthday. According to the internet, that is the average age that the relapsing-remitting form of MS transforms into the secondary-progressive form of the disease (it doesn't remit any more)....I really wish I hadn't read that! Well...not really! I don't intent to yield to it without a fight and knowledge is the key to power!
But the light at the end of the tunnel is it might never happen! - A tantalizing prospect that it may never get worse than this...but I'm not holding my breath.

I'm currently waiting on a list to see an MS nurse - I think that'll be a positive thing. I think the toughest part of this condition so far is having had the diagnosis without any guidance. All that I have at my disposal is the self-help-freak-yourself-out technique of getting to know your disease, which may not be the most useful...