Disabled and desperate

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  • Debbo said  "Patootie - my sister has fibromyalgia too, and she reckons that running really helps her pain.  Hopefully it'll be the same for you?"

     imageGoodness I am surprised ... I would have thought running is the last thing a fibro sufferer would want (or even be able) to do .. she must be a 'tough' lady image

    Pain after exercise is the one 'most recognised' symptom that I find so devastating, because it's each and every day .. it never goes away .. even a short walk seems like I've done a mile*.. on bad days just getting from my chair to the bathroom or kitchen and back is enough for me .. and I am always on a high dose of pain relief ..

    * apparently it's a chemical reaction in the brain that prevents the nerve transmitter signals from being correctly sent from the brain to the muscles .. the muscles get the wrong signal and constantly 'over exert' themselves and muscles tearing is a frequent problem .. in particular I get a lot of deep muscle spasm and have to take meds (more meds sigh!) to try and prevent it

    Ohh and I did too much on my 'little jaunt' to the next village on Saturday .. couldn't hardly move yesterday .. image .. knees like balloons .. and that's just from riding along on my disability scooter and pumping my feet up and down a bit image

  • Kittenkat Kwality Kristmas Krackers said "Love your avatar too!"

     Thank you .. I found Gurgle (honestly, that's his name) .. many years ago .. and as soon as I saw it I knew I had to use it as my avatar .. Gurgle looks just like I feel first thing in the morning .. waking up stiff, in pain, no idea what day it is, a kind of .. 'gnnaarrgghhwhaaatdayisitwhoamI' kind of feeling .. fibro fog (well known name for the difficulty fibro sufferers commonly have in thinking straight and in remembering words, names etc ) raging out of control and just knowing I need a coffee .. only after that can I work out what day it is and who I am .. hahahahaha

  • Ouch Patootie! image

    On the plus side this is an opportunity to begin finding out  what your tolerance level for activity is - how much or little you can do and how often and what your recovery rate is.

    Do you swim by the way? 

  • No I can't swim .. well it's more that I have a fear of water .. a legacy of having a mother who was terrified of water .. but I have been to hydrotherapy twice .. that's wonderful .. but I can only get a 3 week session at the hospital once every 5 years image

    Swimming pool water isn't warm enough unfortunately (and my local swimming pool regularly has complaints from fit folk that the water is really cold) .. there's some technical reason why the water has to be really warm to let the muscles work without stress or something .. and there is only the ONE hydrotherapy pool for miles and miles .. and in any case I need assistance to get in and out of the water .. image

     Been out again today on my scooter .. flippin' freezing .. but had to do a few jobs in the village .. instead of lifting up my feet and going through 'trotting' motions as I did last time .. I merely pumped my heels up and down a bit .. so far so good painwise ...

    And my fitness levels is abyssmal .. my tolerance for activity is minimal .. recovery rate is appalling .. so the only way is up hahahahahah .. but .. and this may seem totally daft .. I do have a very healthy heart .. not long had a echo cardiogram thingy done and was pronounced better than average .. which is a minor miracle given my 95% sedentary lifestyle ..

    Hmm .. better make that 94.5% ... hey .. it's a start ... image

  • Don't put yourself down

    You don't have to worry that you are not very good. "good" is a realtive concept and before you think - Ah but you don't know how bad I am, you don't understand my problems....

    You're right, I don't.

    I do know one thing about you that is more important than your problems.

    You are not just thinking about it. You are doing it.  You are not just the sum of your problems you are the person who is having a go despite them.

    Go for it, Patootie!

    Just be careful not to overdo it. Every newbie always tries too hard at the start and over-trains. Start easy and build up slowly.

    Good Luck and keep posting

  • Well you've been out and about twice in three days, that's pretty good going, especially in this weather image 

  • Oddly enough my neighbour did run a support group a few years ago .. but he wasn't very good at letting folks now about it .. and very few people bothered to go so it dwindled out  .. the next nearest support group is miles and miles away .. and only in the evening ..  about 5 people go there so not really very supportive .. and none of them have Fibro they all have MS .. similar but not the same ..

    I even tried starting a new fibro suport group up .. but not one single person came .. and for two reasons .. we fibromites are always exhausted just getting through the day .. and people in this particular area are loathe to come forward for anything .. there are very few clubs/societies etc  .. it's just not what folks round here do image

    After Christmas I am going to try out one of those wobbleator thingies .. you know those vibration machines where you get your muscles moved about but passively .. passive massage works wonders for me .. so hopefully that will be a good thing to try out ..

    And .. I've been doing a bit of investigating on Runners World .. and I've found several 'running' type groups have local races .. now .. I'm never going to run any distance again because if the fibro doesn't defeat me the Osteo-Arthitis will .. however .. it's made me think about all sorts of things .. everything I've done before has all been medically biased .. I just never gave sports a thought (and why would I when I am told I am very disabled and must lead a sedentary life) .. but surely there must be something I can get active with .. even if it's only trundling round a running course on my scooter .. that's far more than I would ever normally do .. and sometimes it's the actual participation that counts .. not how you do it ..

    It's an 'odd' feeling that I have .. kind of like I have 'outgrown' my shell .. and I'm searching for a new one with new interests and activities .. or maybe it's simply me saying .. 'dratted rut, I'm outta here' image

     Blimey .. I haven't felt this motivated in about 10 years .. and it's all thanks to you good folk here .. image

  • Heehehh .. and I only laugh because I have been asked this before ..

    I like to think I  get 'better' days .. mainly 'coping' days and a fair share of 'pretty bad' days .. my fibro cycle is roughly a 6 weeks cycle .. for roughly a week I can be quite 'with it' and able to concentrate fairly well and get things done and also pretty active (it's when I catch up with my housework and banking and so forth) ..  then it starts to go 'downhill' and I start getting lack of concentration and physical probs for a week  ... this is usually followed by roughly a week of really sluggish thinking and inability to do very much without the exhaustion getting too bad .. then I have what I call my 'rock bottom' week .. this is a week of feeling as if I have severe 'flu (proper influenza not just a bad cold) .. all the aches and pains that go with 'flu and the 'muddleheadedness' .. then I get a week of feeling better but not with it .. then a week of feeling more on top but not right .. then back to my good week and so the cycle goes round and round ..  one good week .. 4 so-so weeks .. and a rough week ..

     Add into that any of the 63 symptoms that were on the list I gave the link for .. because whatever kind of week I am having all the symptoms just keep coming at me ..

    But .. this all makes it sound like I am whinging away and violins are playing in the background .. I am NOT a look at 'poor me' person .. but I do find it very hard to actually get up and charge about .. and of course the continual pain killers have a 'dulling' effect too .. but without the pain killers I am much much worse .. ironically taking even more pain killers relieves practically all the pain problems .. but instead of coping in my own home I would need to be in a nursing home of some description because then I am pretty much just a 'zombie'  ..

    Blimey ... just read that through and it sounds awful doesn't it ... heheheh .. I wouldn't want to be that person I just read about .. no way ... ohhh .. but then it is me isn't it .. hahahahaha

  • Hi Patootie

    What a fantastic woman you are! It sounds to me like you are determined now to get everything you can out of life! Have you thought about helping out at a local sports/running club? I have only just started trying to be active myself- It started because a friend talked me into marshalling at a club race-  really enjoyed cheering all the runners on, even though I couldn't do it myself. I found loads of people with ideas about how to start and what activities I would be able to cope with.

    Good luck with all your efforts- anything you d that you would normally not even try is a bonus!

  • Whether your feeling good or bad, up or down, someone on here will always be around for you to share it with hun.
  • Hi Patttoie, just checking in to see how you are. KK is right , motivation is the key.  if you think you can do something, you will do it! 

    Take care, though and don't overdo it on your good days, take things steady and aim to do a little more each week.  Remember there is no such thing as failure - only feedback image   Do you have access to a physiotherapist?  I'm sure they could give you a program exercises you could do in your chair to strenghen your muscles.  What methods have you consisdered to help with the weight loss?  I've great success using Paul Mckenna's system so that may be worth a look - see the <a title="website" target="_blank">website</a> for more info.

    Good luck and take care

  • In reply to Yvonne M .. 

     Typically I am just starting on my 'downward part of my cycle' ..  (funnily enough I can always tell when I am about to go 'down' as my spelling gets to be atroshus nd I mack lost of tpyos) heheh .. just in time to be 'at my worst' over Christmas .. but that's no matter as I am not going anywhere and I've done all the shopping I need to ..  image .. I've long learnt how to cope with the bad weeks .. by stocking up in the good weeks ..

     The 'heel pumping' I did on my scooter was surprisingly quite succesful .. so I think I know where I am starting on my fitness levels .. rock bottom .. no untoward 'extra' pain .. although I was a bit tender in the back of my calves and achilles heel .. although a few clicks of my 'pain pen' did wonders to ease that ..

     Re: Physio .. no longer available on the NHS for 'long term sickies' in my area . unless you have a 'new' problem .. and on my miserly incapacity benefits I can't afford to go private .. one of the 'catch 22' problems I have is that I am still officially  'off sick' .. from 1993 ...  I won't work again .. but leaving me on the 'off sick' register means the Government doesn't have to count me in their statistics .. because once you've been off sick for a specified time you 'drop off the list' .. if I could be classed as 'not fit for work' I would actually be better off financially and helpwise  .. New Labour - "we care for everyone" ... NOT ... image

    Re Diet: Hospital nutritionist gave up with me .. to eat enough to be healthy I put on weight .. to eat to lose weight I get ill .. all down to my totally sedentary lifestyle image.. but that is all going to change .. I simply can't afford to sit around any longer and be told 'you are too unfit to exercise, but if you don't lose weight you'll die young' .. doing as I have been told to do for 10 years has only made things worse .. I have nothing at all to lose and years of life to gain image

    I know it won't or can't change in a few weeks .. this is a long term goal .. but hey .. I have started out on the road .. "do or die" heheehhh ...

    I think Runners World forum folk are just what I needed to 'get me going' .. thank you to everyone who has taken the time to read and more importantly post a reply to my plight .. you really are wonderful .. image and I really do appreciate all the help given ..

  • Glad you're feeling so positive Patootie. You're right this is a great place for motivation and support. I've been posting on here since the summer and love it and miss it when I am away from a computerimage I think my husband thinks I spend too long on here, but I feel I have made friends even though I haven't met people yet (though I'm hoping to meet some between Christmas and New Year so that'll be good). I done a few races now, I did my first ever race in April - it was great. As Leanne said I also enjoy marshalling at local races - it's a great way to get involved and do your bit if you can. It's not all standing out in the cold, at one I was at the start finish sorting out the numbers for those registering on the day, so I am sure they would welcome you with open armsimage Anyway, just wanted to check in and see how you were getting on, keep posting so we can hear all about your progress. onwards and upwards. B x
  • It must be sooo annoying when you need the NHS help you so that you can help yourself  - but they just see a) the problem and b) the expense.

    Reminds me of  a TV interview with a lady who had put on a massive amount of weight having become virtually immobile wating for a hip operation  - only to be told she had to lose weight before she could have the op. Grrr!

    Helping out with a race sounds like a good idea BTW.  And you are bound to meet people with lots of good ideas on how to help improve your general fitness.

  • The local council gym has a 'chair exercise class' that is all sitting down, for people who would struggle with the usual aerobics etc. Mum went once for work, & apparently it is Tai Chi type stuff & gentle stretching. It might be worth asking your local council if there is anything like that near where you are?
  • well Patootie, if you know your cycle you can work with it

  • is there an FMS Support group anywhere near you?

    what about exercise in water, if you have access to a warmish pool you may find that helps a bit -just moving in the water doing some mobility stuff, walking in the pool or swimming if you can - even an aqua aerobics type class if you can manage it ?

    well done for starting out - keep with however long it takes you

  • Hi guys, how's it going?

    Doing the Reading Half next year?

  • Just a more few days to Christmas .. got everything sorted ..  took my neighbours Christmas cards round myself this year .. not easy for me as most of the homes have steps down into the gardens and then steps up to the door .. so 4 lots of steps for each neighbour .. I even found some energy to put the Christmas tree up .. and I haven't bothered to do that for about 10 years ..

     Been very tired this last few days .. but .. still trying to keep up with doing a bit more every day .. image

  • Well done Patootie image best wishes for Christmas image

  • You are more organised than me, patootieimage.  Keep up the good work and have a great Christmasimage
  • Don't feel you have to be better every day.  Better on each cycle is surely enough?  Sounds like you are going to have days when you can do less.  But if each 'peak' is higher then you know you are progressing over all.  Allow yourself to have really slow progress.   Just keeping things the same would be an acheivement actually....

    It's taken me two years to go from being able to run 20 seconds or so to running 3 miles without walking.  That's very slow progress by most people's standards, but it's progress.  You have many more problems to cope with than me.

    One thing I found really helpful was a 'spinal stability exercise class' basically pilates.  I have osteoarthritis in my neck and found that helped a lot.  I also have an exercise ball and found it surprising how much just sitting on it for a while each day did: maybe that's something you could try?  Once you can sit on it comfortably, move on to lifting your feet alternately while keeping your body still, straight and upright.  Well that's an idea anyway!

    It's so annoying how expensive keeping fit can be.  I'd like to swim several times a week but just can't afford it (and a cool pool is fine for me!)

  • I've looked at those balance ball things .. they do work your core muscles quite well (and mine desperately need something doing to them, flippin' floppy things) .. my biggest fear though would be rolling off it .. because I simply cannot get myself up off the floor .. the osteo-arthritis and fibro do a 'double whammy' .. my knees are far too arthriitic to bear any weight on them at all .. and my leg muscles simply won't move in ways that would allow me to scramble up without having to get on my knees ..

     .. and I should know as I got stuck on the floor for about 3 hours this summer image.. after several very painful attempts to get up where I was .. I finally had to slowly shuffle on my bottom all the way to the bathroom where I have some waist height hand rails that I could haul myself upright again with my arms alone .. blimey for about a week afterwards I could hardly move I was so stiff .. .. heheheh .. scary at the time but in hindsight it IS very funny .. but I have put in place some measures to help myself should I ever fall over again ..

     And that's good thinking .. planning to improve each 'cycle' rather than each week .. because 'bad weeks' are just that .. blinkin' awful .. sometimes only bearable only because I know they don't last very long ..

    I will still try and do a little tiny bit more every day though .. it's quite 'exciting' thinking what to do 'better' each day .. even my housework is improving because I have gone back to my 'old regime' of doing 4 very small jobs each time I go into a room .. even if it's only picking something up or tidying something .. it's an 'extra' job done .. and less to do when I get round to vacuuming and dusting properly .. so I am tackling more housework .. slightly more vigorously ..  baby steps maybe .. but each day a tiny bit further  image

     And if I 'flag' at all .. then a few minutes reading here in the Runners World Forum .. gives me a 'bit more strength'  .. because I read what everyone else is achieving with all their problems .. and I think well if you can do it .. I can at the very least give it a blinkin'  good try .. image

  • Good girl

    I like your spirit

    image

  • Plodding Hippo wrote (see)

    Good girl

    I like your spiritimage
    image thank you .. but I'm afraid my 'sprit' has been sadly lacking this last 10 years .. spent far too much time listening to docs and hospitals and so 'putting off' doing physical things because they tell me not to do it, along with wallowing pathetically in my fibro induced depression .. but hopefully I've now moved on and 'am doing it for myself' image .. even if it is at a snails .. snail pace .. image
  • But hopefully i've now moved on and am doing it for myself ....even if it is at snails pace

    Well ...Mick reckons ... Snails pace or not, least your doing what you want to do !!

    And that's positive

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