Stuck on sofa fed up

Matia83

Hi all I'm new here just bear with me while I find my feet. I'm 35 single mom from southwest diagnosed with psoriatic arthritis, central sensitivity syndrome, generalized anxiety disorder and IBS. I'm going through a tough treatment regime which includes methotrexate, sulfalazine, predisolone, naproxen, omeprazole folic acid and painkillers. Physiotherapy, hydrotherapy and occupational therapy.
I've had to apply for ESA and PIP so I'm dreading the assessments for them.
I'm on my own stuck on my sofa on strict rest by nurse and consultant as my bloodwork is a mess. I'm completely swollen even my face, my legs are so heavy they don't want to move and I'm so so bored. There is only so many hours in the day you can 'sleep it off'. I'm lonely kids are older and get on with their own stuff so I have no one to talk to I was hoping to be able to socialise through this forum but you will have to bear with me as typing is agony but I think I'm going to lose my marbles if I don't do something thanks for reading
From M xx

stickywicket

Hi there, Matia. I'm sorry you're feeling so low right now but I'm sure I would be too if I was having to be sofa-bound all day. At least you've made a start to make your life better by coming on here for company. I hope we can help.

I understand PsA and IBS but I had to look up 'central sensitivity syndrome'. It sounds rough. If your nerves are over-sensitised is there no way to de-sensitise them? Obviously not, or they'd be doing it.

Your meds regime, though, sounds pretty normal. I take meth, hydroxychloroquine (another DMARD), folic acid, omep and, when absolutely necessary, co-codamol. My stomach won't do NSAIDS any more and, as for steroids, I avoid them whenever possible. (Are they responsible for your 'swollen face'? They are renowned for causing 'moon face'. I've had it when on them.) It's great that they're giving you physio and hydro. Hydro is always the coveted treatment as it really does help so much. We can do far more in the water, with our bodies supported, than outside it.

Whenever I'm more or less confined to the recliner after an operation, I have a variety of techniques to get me through the day, avoid boredom, postpone pain relief (because I'm no longer thinking about it) and generally make me feel better. Visitors are great though sometimes only in small doses. Then there are the prescribed exercises. Not necessarily a joy to do but so essential to recovery. I read all the books I've been meaning to read but not had time for before. I do computer games – anything to take my mind off the pain and postpone the next round of pain relief. And, when all else fails, I watch the box. Pain is horrible but, the more we think about it the worse it gets so I consider any form of distraction is good.

How are you managing to cook? Does the family help? Healthy food is so necessary for recovery too. But some healthy food requires little or no preparation. Salads and fruit (better still, raw veg) are great. Soups can be healthy. Eggs can be quick and versatile. Fish (even fish fingers) cooks quickly and frozen veg, which can be every bit as healthy as fresh, cook in minutes.

Personally, I always try not to sleep during the day as it messes up my 'proper' night sleep. I've had times, though, when painkillers dictated otherwise.

Anyway, welcome aboard. I hope we can help.

dreamdaisy

I have PsA and the joint damage that caused due to lack of treatment led to OA, some joints have one, some the other and others both. I began back in 1997, I started meds (sulphasalzine and tablet meth) in 2002 and it was accurately diagnosed in 2006 which changed nothing. OA was diagnosed in 2011 and then fibromyalgia some time after that. I tried a number of medications over the years for the PsA but it was all too little too late in terms of making a definite improvement; now it's controlled by weekly injected meth and fortnightly injected humira (an anti-TNF). I know they are working because my bloods are lovely (I only hear the results if summat's up, haven't heard anything for more than two years). I manage the OA with minimal pain relief, exercise and distraction techniques but I am very lucky because sofa days have been a prominent feature in my life since 1965 so I am an old hand at them.

When the OA was diagnosed I plunged into depression and was given some anti-depressants by the GP. I was determined to come off them but my rheumatologist was of a different opinion, her reasoning being that it Is as stronger mentally I would cope better physically. She was right and to this day I take a small daily dose to help me manage. Things are always tougher in the winter due to the darker days and poor weather (the OA loves this time of year) so I also take a daily Vitamin Deficiency plus calcium to bolster resources.

After years of ill-health I find that distracting myself from what is going on is the best coping mechanism for me. I read, watch TV, do puzzles of all kinds, ring friends. I also make myself go out, make myself walk unaided for at least ten minutes because the mental boost that gives is beneficial. All my toes have PsA, as do my knees whereas my ankles, knees and hips have OA so it's not easy to do but I know that keeping my muscles exercised and stronger helps them to better support the joints which won't reduce the pain (I am bone-on-bone) but at least I am being pro-active rather than passively receptive. That is important for my morale and self-esteem.

Being used to being ill certainly gave me a head-start when this all kicked off but it has taken me years to get to grips with what's what and what is the best way for me to tackle the issues arthritis raises. I decided not to have children because I knew the risk of passing on the dross was not a responsibility I wanted: that choice has simplified life no end which is a blessing. I married three months after it began and my husband has witnessed the steady deterioration but we get by with lots of laughter. He is not afraid to stand up to me either, he does not pander or pity: after a very tough morning I said 'I suppose I should go for a walk but I can't'. 'Can't or won't?' was the reply. I went and felt better for it.

It can be very hard to motivate ourselves when the pain is overwhelming, the tiredness too, the drugs seem never-ending and the general unfairness of others leading lovely lives hits hard. I appreciate what the meds are doing for me, I am used to taking them and think nothing of it, I am also used to the daily necessary maintenance of exercise etc. and always remind myself that doing these things enables me to do more of what I want. There are the harder days (yesterday was one, today is another) but the fairy lights are on here and there, tea lights twinkling too, I've done my meth injection and am having a cuppa. Things are as right as I can make them and only I can do that, no-one else can do it for me. My new jigsaw beckons . . . . DD

wazz42

Hi,

I agree totally with having various distraction techniques, I try learning Welsh, since that’s where I live, but anything is good and a change/challenge for your brain. There are lots of online courses free, or try UTube . I also listen to the radio live and podcasts, the bbc have loads to choose from. Also your library might have an online lending service.

Have you asked your local social services for an assessment? They can supply aids to make your life easier

When I have to get up to visit the loo I find a different place to lie in, eg settee and bed, just because it will help share the pressure on your bum etc. Can you get to see outside? Just to see some life around can be less lonely.

I’m lucky not to be stuck in your situation, hopefully they will get your bloods sorted so you can feel a bit more 'normal' soon

Hodgy

Matia I'm really sorry to read of your story. There are so many people on here to help you. I'm pretty new, I only joined last week. I am, was, very naive to the osteoarthritis I have in my knees and foot and held onto a deep belief/ dream that I could still train for the London Marathon. I WAS WRONG. I am a runner, or I was a runner- I don't know anymore. So I sound crazy and you probably all think I can't possibly understand arthritis like - the same condition that you all have but I do, I am learning that slowly it is taking from me all the things that make me- me and the one thing I love 'To Run'. So although I may not understand all of your conditions I do TOTALLY understand the boredom, the constant pain, how it makes you feel so down and how you question why me! If you ever want to chat I will always listen and understand. I am 45 and a full time carer to my daughter who is severely disabled -she is 20 and she is my beautiful girl. When I am going to slow or I say I'm sorry it hurts, she says "Put some cream on it Mum you can always kiss it better" If only... Sending you a hug X