Best laid plans

[patsy]

The saying one day at a time is so true, The pain in my leg has eased thank goodness however there is a price to pay for every day of feeling good I get a dat of total exhaustion. I had so many plans for today, but I knew as soon as I opened my eyes this morning that the best laid plans of mice and men as they say.

I have dozed all day on the sofa and still feel worn out.. I am supposed to be going away next month for a few days with my daughter however what do I do If I feel kike this? I know I cant live my life with what ifs. problem is if seems to be in my life all the time since this disease sneaked into my life.

[hamble99b Volunteer]

hopefully you'll feel better tomorrow, as for your hols, only do what you can. I hired a wheelchair, but many places have scooters to hire.

regards, sandra.

[HiveMind]

I'm with you all on this.

I was meant to attend something this evening but just felt awful (as you said Patsy - I knew when I woke up what kind of day I was going to have) so I didn't go. I just wasn't well enough.

It makes me mad when this happens but what can we do?

I've learnt to be philosophical about it and take it on the chin and be grateful for what I CAN do.

[patsy in reply to HiveMind]

Quite right I am grateful forthe things I can join in but I feel a little bitter that Iwas this woman who worked full time , danced went on mad nights out lived life to he full but now have tosit back and watch it all happen. I keep telling myself I have doneit all anyway but just some days when I am down and out like again today I have to ask WHY.

[HiveMind in reply to patsy]

Sorry Patsy. I didn't mean to sound so smug! Reading my previous post back again, I can see that it reads like that. Apologies.

I too worked full time, had a social life and had a brain that worked properly!

Now I couldn't even work part time, all but one of my friends have decided I'm no longer "friend" material (some of them I'd known over 15 years). And my brain fails me constantly these days.

It's hard to have this disease and some days I too just want to give up. But thankfully that soon passes and I get to thinking positively and pull myself out of it.

I have never been an envious or jealous person but, like you, I now find myself looking at people while I'm out and wondering if they know just how lucky they are to be (seemingly) healthy?

Apart from the asthma, heart failure (brought on by my CSS) I also have a large facial portwine birthmark to add to my problems. But hey! That's a whole other story!

[patsy in reply to HiveMind]

I did not think you were being smug at all, I too have several other problems Stoma for a start Kidney failure,Heart bypass, just to name a few but my mum alays said I did nothing by half. how right she was !!

[HiveMind in reply to patsy]

Well at least your sense of humour is still intact!

[BronteM]

Good luck with your holiday; we all need a change of scene though I finds it so frustrating that I have to watch things going on with the family rather than join in! I am on the look out for a really jazzy statement stick, so that I can walk and wave and cheer effectively.

It shoulfn't be a relief to know that other people have to work one day at a time too, and see all their positive plans disappear ...... But it is.

Yesterday I thought 'good day' when it started, but by late morning it had all gone, and the rest was on the sofa snoozing. Not helped by sore lips and tongue that have decided to blister and peel this morning. Any ideas? I'm trying Vaseline, and have some anti histamine that I could take?

[patsy]

I now find myself looking at women and thinking I wish I was as healthy as you!!! wrong because I dont know what is happening in that womans life, Its good to chat to people who know how you feel. I was going to cook a nice dinner this evening ,but I have woken upm dizzy so its going to be fish and chips, The problem with this illness is one never knows where it will attack next. I have found Hydrocortazone lozengers helped with my mouth sores see the doctor although I dislike going to the surgery some time you just have to. Take the antihistamine I would and any cream but I also found cold sore cream worked on my lips 99 pence from your chemist or wilkinsons.

Cos I cant go out in case I fall over I am going shopping on Ebay for some new UGGS feel better soon keep in touch.

[Tony-LakeDistrict]

I believe one can build up a little resistance to the exhaustion, I do emphasize a little.

For me the secret has been, on a good day do not go to your limit, it is so easy when you are feeling good to over do it. I am able to do now, so much more than I was a year ago, it may seem like a little pottering around to a healthy person, but it does make me feel as though I am a little in control of my life.

I have gone from having nearly every afternoon in bed, to maybe once or twice a week.

I hope since you do have good days, this might be of some help to you.

The very best of luck

Tony

[patsy in reply to Tony-LakeDistrict]

I agree with you the problem arises when you do have a good day is to try and cram as much in as you can, its a huge mistake and one I am trying to rectify. I cant get over how I manage to just go to sleep and not realize till I wake up 2 hours later and know I have slept through some really good conversation. . How cross I get.

[kath12341 in reply to patsy]

Hi Patsy Fatigue is a biiggy, I have been working part time for for nearly 5 years and am off sick at the moment i have listened to my body and rested when I needed but know I canniot get on top of the fatigue and brewthlessness. My consultant had me in for tests and Before i had all the tests said you need to be doing more to try and get fit. I had been up the hills in the lake district a few weeks before, all be it slowly and with my rollator to keep sitting down on. After all the tests the verdict was you are doing to much body not coping think about stopping work.I know have to have an ATOS referall thoguh work to assess any other speicalist equuipment and if i will be fit for work. How Irnic if i get finished on medical grounds and then atos find me fit when I apply for ESa.

[HiveMind in reply to kath12341]

Hi Kath,

Would you mind letting me know what a "rollator" is? It sounds useful!

[kath12341 in reply to HiveMind]

Hi a rollator is like a shopping trolley without the basket and has a seat and brakes my cost 100 pounds It makes life so much easier, I can lean on it when walking sit when I need it is light fits into the boot of the car. and I often put my shopping on it. Check them out on any mobility web site . Not supposed to be used a a wheelchair but occasionaly if needs must. Hope this is useful

[HiveMind in reply to kath12341]

Thank you!

I'll have a look online.

[hamble99b Volunteer]

my friend just bought an all-terrain rollator for £129 [don't forget dla = no vat, might be same with blue badge] I think it was called "able it" It has a sturdy seat and stengthy [?] seat

regards,

sandra.

[hamble99b Volunteer in reply to hamble99b]

oh my poor brain I've just figured out the word I was searching for was... strong!

[hamble99b Volunteer in reply to hamble99b]

it has a strong seat back.