Disabled and desperate

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!

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    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 ..   .. 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 ...

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 .. 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

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 ..  and I really do appreciate all the help given ..

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.

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 ..

Well done Patootie  best wishes for Christmas

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 .. 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 

 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 ..

Good girl

I like your spirit

Plodding Hippo wrote (see)

Good girl

I like your spirit