Disabled and desperate

If you want to you will

Its that simple

Plenty of advice and encouragement on here

Good luck

I know it may not seem much .. but today I went out .. admittedly on my disability scooter .. but nonetheless that is a lot more 'action' than just sitting in a chair staring at my computer screen ..

 The village centre is only 1/4 mile away .. but this morning as it was such a lovely morning .. I suddenly felt inspired and drove to the next village a mile away to post my letter .. so I've had a 'miles worth' of fresh air .. a 'miles worth' of using my upper body to balance on the scooter and all the way back I did nice deep breathing exercises to get my blood nicely oxygenated ... and as much as I could shuffled my feet up and down as if walking ..

 As I say .. it may not mean much to most of you .. but for me that was a 'major' workout .. and it felt GOOD ... but now I am exhausted

 If anyone is in the slightest interested there is a list of the 63 most common Fibromyalgia Syndrome Symptoms listed here  .... generally we get a selection of 1 to 6-7 of the symptoms on any day .. you never know which symptom/s you will wake up with .. and for how long you'll have it .. but you can be sure it will be something ...

http://www.hystersisters.com/vb2/showthread.php?t=93155

Good for you

keep it up patootie

Go for it, and when it gets tough... and it will... re-read your messages of support and let them drive you forward, we're all rooting for you!

Good luck

hey patootie keep it up.  i used to run in the fens and got to love it.  being able to see forever.  was a bit daunting at first, "christ, i've got to run down this stright road that i can't even see to the end of, but once you get used to it, it's very liberating.

 most of all,  enjoy what you're doing.  90% of the population can't do what you do FULL STOP, ie resolve to get some exercise, and get off the sofa.  add to that the problems you have to overcome, and you're doing great.

RW at its best

dont go away

That's great news Patootie!

As YvonneM says, every journey begins with a single step

Well done Patootie

Love you avatar too!

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?"

 Goodness 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

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 ..  .. knees like balloons .. and that's just from riding along on my disability scooter and pumping my feet up and down a bit

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!

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

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 ..

 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 ...

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  

patootie - is there a support network for your fibro

The Crohn's and Colitis society has one with regular local events, medical talks and meetings. I just wondered if there could be that source of support out there for you?

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

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'

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

patootie - Do you get good days and bad days with your condition or is it pretty constant?

Brilliant start though, once the motivation is there......