Trying to be OS with a Chronic Health Condition

Cat501

Seakay you're right, I cried all the way through my tribunal. I can't say the two men were particularly horrible, but it is SO formal and intimidating - sitting across a HUGE table from two "suits". You really MUST take someone to the tribunal with you (I had a Welfare Rights Officer from my local council and he was BRILLIANT, there is no way I could have gone in there without his support) because your chances of winning are greatly increased with representation (from 40% to over 70% I think are the figures).

beadgirl87

Hi prepareathome.

Sorry to hear how ill you are atm. I also have ME, I was diagnosed 2 weeks before my 18th birthday (felt like my life was over) and now just turned 24. It is difficult, but over time I have learnt what to do and how to manage it.
I wanted to suggest a really good website which I joined and was very helpful, https://www.butyoudontlooksick.com. http://www.butyoudontlooksick.com/ the name's in the title, its support for all illnesses where you look 'fine' to other people. The most useful thing is they have methods to explain to friends and family about how it affects you and how it works. There is a great thing called' the spoon theory'. Maybe this will help with getting some support for your family, or maybe for them to realise that a phone call or skype is just as good as seeing them in person.
With your husband, can you teach him to cook instead. Sit downstairs somewhere and direct him how to cook stuff, even some really basic meals.
I'm not sure how long you have been ill for, but I have found that the only way is by manging it and changing your lifestyle. I fought it for years at uni, took pro plus, sleeping pills, tried to keep up with everyone. Now I find the best way is to plan things and to eat as healthy and not junk food as possible.
I had real problems with the forgetfulness and I couldn't talk as I would forget words, I am also dyslexic as a result, and I have double vision as my eye muscles are too weak to move my eyes.
Another thing, if you struggle with the computer screen hurting your eyes, you can change the background colour of word docs and some websites if the white and black text is too much for you. I had a special test to get the exact colour for my eyes, but even changing the white to a grey or cream may help you use the computer longer.
Also if you like reading but books are too heavy, get a kindle as they are so light and if you are stuck in bed, means you can read alot.
I wish you luck with everything, and it does get better over time.

lostinrates

Seakay wrote: »

ME etc has almost always required an appeal to get benefits of any sort because the symptoms etc don't fit into the tick box system, and no one medically qualified is going to look at the forms until at least the appeal. ie your medical needs are being decided by low grade admin assistants.

whilst I agree with all of this I think part o the problem is it IS an ''easy'' illness to fudge (like ''bad back'' or depression). All real illnesses that cause any degree of suffering but also that can be suffered less at sometimes and just plain old faked.

An aquaintance of mine has ME (and only ME). when she started at the ME support group with a lot of people with fibro she mysteriously and overnight got fibro symptoms too...but....ony when it comes to doing something she doesn't want to do. Now, all of us on this thread must KNOW how very much harder it is to do something you don't want to do when feeling in pain and exhausted, and how much easier it is to motivate ourselves, and indeed sometimes feel less pain, when doing something ''good''. But this is something else...too much pride to do soething she could do, and blames routine (but works a viluntry routine minimum of 12 hours a week for various support goups). IMO a scheduled 12 hours volunteered could be a scheduled 12 hours paid (in appropriate work.)

Many people can and don't work part time hours....whether ''malingering'' or simply stuck in that ''sick person'' mentality I spoke about before. Its my opinion these people are as to blame for making life for genuine claimants harder as much if not more so than anyone else.

To make it clear, I'm not suggesting anyone and eveyone with this sort of debilitating and chronic, and moe to the point unpredictable illness can work, but that a proportion that can and don't.

prepareathome

Deska That Thermomix does sound fantastic, but its way beyond my price range at the moment - kitchen though is full of gadgets that help. I like a gas hob, just me but do have an electric oven - I couldn't get down to use my oven any more and till I had the new fitted kitchen put in with wall mounted oven and separate hob I actually bought and used one of those mini kitchens that is an oven with two hobs on it, brilliant. Boy when I had designer out to work out where I wanted everything in kitchen did we have fun, I tell him I wanted hob but oven wall mounted so first design of course is hob with oven underneath it in a place where I didn't want hob, then second design hob in right place but oven still underneath it - he just couldn't get it that I wanted the oven on wall, third design at least oven on wall but things still not in correct place, I think it took 10 designs before he got it right ( and he told me had done the job for years), then he said how as I planned on having gas on other side of kitchen would cost more and also housing for oven more but I didn't care I wanted and got the kitchen I had dreamed of and it is easy to use - hob with work surfaces either side with cupboards above them that I keep all my spices, seasonings, oil etc in one and dry things like pasta, rice, lentils, barley etc in other so all to hand. I had thought long and hard about how I wanted the kitchen taking into account what I could and couldn't do and even three years on I still love my kitchen. I have so many gadgets to make life easier. Even have two slow cookers, don't have a pressure cooker as don't like the taste of food made in one, but have my blender, grinder, food processor and cannot remember what else. If it makes my life easier and I can afford it I have it and none sit gathering dust. To many I know it will not seem OS to use gadgets but to me if it does mean I can cook from scratch I will use them.

Today I am tired but pleased with myself as I had planned since last week to go to Lidl to buy one of those alarm clocks that light up before you wake to try and simulate sunrise, in hope they will help me wake up and not sleep as long as I do in the winter. Day didn't start the best as hubby came in at 7.30am and said what happened to your alarm clock, it didn't go off at 6am, it has 4 alarms and not one of them worked ( has worked out, must be in a huff at me wanting to buy a new one. Lidl opens at 8am and takes 30 mins to get to from mine in ordinary traffic and we were going during rush hour ( lasts about 2 - 3hrs now here). So forced myself up and swallowed pain meds and although body was so painful and stiff I got into bathroom, washed and cleaned my teeth. I managed to get ready by 8am, was exhausted and pain meds had not kicked in yet, but was pleased that I had managed to do it. I knew I could rest in car and indeed by time we got to the store pain meds were working so felt more 'normal'. Got there just before 9am and only a few people there and went in and found they had just 4 of the clocks, so picked up two ( one for me and one as Christmas present for son), plus the other things I wanted - micro fleece sheets, fire-guard, stapler - not the paper one but a big one for putting material on wood as want to recover the dining chairs. They also had surge protection extension leads that can take 8 things plugged in for £8.99 so picked up two as we are slowly changing all the extension leads in the house for these. Hubby liked the look of the work socks so got them as well. I also picked up some silicone bake-ware as have some but want to replace all my bake-ware for silicon ones ( so much lighter to use). Grand Total £140. Hubby though has had to take one of the alarm lamps back as when I opened it just before I found the remote and adapters were missing. Doubt he will be able to get another one, as I asked this morning if the four out was all they had, had and was told yes, cashier said its what they do, have a few expensive items cheap to get you in the store ( I had guessed that). So Hubby just going to ask for money back and I will order one from Amazon, not as good but son said he would be happy with any and I should keep the one that was complete and remote could be handy for me.

After Lidl we went to our local shopping centre and we went in for breakfast, a treat we very rarely eat out, as usually I just want to go out do what I have to and get back, well would like to be out more but usually to tired, but adrenalin was keeping me going. So he enjoyed a full cooked breakfast and I had a bagel. This let me rest and then we went and did a bit of store cupboard shopping ( must remember to declare it on the GS thread and add it to my total on signature).

I have just been resting since we came back and didn't feel up to going back to Lidl again today, but hubby said he was happy to go.

I have got hubby's dinner on - Duck and Plum sausages ( bought at Farmers Market on Saturday) with tinned potatoes in gravy in oven, so when he gets back it should be ready as he wants to eat handy as he has his last bowls for this year tonight. I don't know what I will have yet, not hungry at the moment.

Over the years I have done many strange things like put milk in cupboard, soap powder in the freezer, meat once in tumble dyer once, oh the list is endless. Hubby like me is used to searching in very strange places for every day items. I try to keep everything in one place - keys hung up behind front door when I come in ( not always successful), crutch beside bookcase in hall, grabber in same place ( this always seems to be found elsewhere, I wonder why :rotfl::rotfl:

Prettyinpink_2

Hello all :hello:

I have IBS, anxiety and depression, all of which vary in severity but seem to be interlinked.

I'd love to get my house in order and do more cooking, but it takes me quite a while to get sorted in the morning before work due to the IBS and I just feel so tired after work most of the time. Currently taking iron tablets to treat anaemia too.

So I'd be interested to read any tips.

I just read the spoon theory, thanks for the link to that website beadgirl87. I feel like I'm using up most of my spoons for work.

I work full-time, but my husband has said we can survive with me doing a part-time job. But I don't know if that would be a good idea or not.

daska

prepareathome wrote: »

I wanted and got the kitchen I had dreamed of and it is easy to use

I'm so jealous, we're stuck in rented at the moment and the kitchen is quite a good size but incredibly badly planned and installed!

prepareathome

Welcome to all, lovely to meet everyone.

Am sure between us we can come up with plenty to help.

For me I admit gadgets are a big help as others have said. Might not be really OS but if they help get a job done that's what matters.

Am feeling pleased hubby just came back with the last wake-up light alarm, he said when he took the other one back, he noticed one left on his way round so grabbed it and straight away when it was his turn the SA said to him, that one coming back - me thinks they knew one of them had bits missing but put it out anyway in the hope someone would buy it and be to lazy to return it.

Rosetta92

Just found this thread and was reading Preparedathome's troubles with breakages. Have you thought about getting some melamine crockery? Lots of SMs sell it as camping plates etc - very cheap and cheaper still at the end of the season. Did a quick search on Amazon and you can even get Emma Bridgewater designs nowadays (not my style but shows the range you can get) - they also had a dinner service for about £20.

Hope this helps - and sending hugs - don't know how to do an icon for that yet.

prepareathome

When I had my tribunal for DLA an advisor was supposed to be with me but had to cancel on the day so I took hubby in with me. They would not let him speak at all. They said they only talk to the person who is appealing no one else. They treated me like dirt, actually said that if I and my husband only considered work rather than living on benefits I would be fine. When I told them that hubby worked full time ( this was before he was off 8 months due to Slipped Disc, which was pressing on nerves and caused paralysis in his legs - and Sciatica - which kept him flat on his back for 6 months and his work medically dismissed him and took him back when ok but only part- time as they knew my hubby hates being off work, but had no option as his legs wouldn't move for many months and as he was a delivery driver they could not offer him anything he could do stuck in bed and doctors have actually told him he should not do this work, but only thing he can find and he hates being unemployed) and had taken day off as a holiday to be with me they never even blinked, just went on about how working is something man was meant to do and how would the world be if people let a bit of pain or tiredness affect them. They like our current government seemed to forget that DLA is for people who work as well as those that don't. Obviously I didn't get the DLA then and it took me quite a few years for me to pluck up the courage to apply again and that time I got it easily and so we were able to buy a car ( cannot get a mobility one as hubby uses if for going out himself) and now car is paid off I have a come apart mobility scooter which is so good and means like today could do more and why although tired am still awake where as Saturday I walked around the Farmers Market for an hour and was in bed exhausted when I got back and asleep from just before 5pm.

laurel7172

I'm sure this has been said, and it's easy for me to say, but the trick is to bank good days. Think of it as giving yourself a present the next time you're down, whether it's a home-cooked meal in the freezer or some seeds poking through.

I know you said you could only manage double batches, but I wonder whether it's the chopping of the vegetables that wears you out? You can get away without chopping them in a slow cooker-just peel and drop them in, then break them up (or get hubby to break them up) in a few seconds with a potato masher when they're done.