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I have decided I don't want to live any more(98 Posts)
I can't lift my kids, bounce on the trampoline, run about or lift youngest into a car seat.
I can cuddle and be cuddled. Give and receive kisses. Shower my kids with positive comments and generally try to raise them to be nice (should that be "naice"?) people.
I also get to do the bloody washing, try and keep the house clean and feed everyone.
I know which of those lists makes me a half decent mum!
have you got a social worker? benefits advisor? direct payments for PA to help you as a parent?
I've got MS, dd aged 13
her worst fear was that I would die, not that I was disabled
Hi Korma, I don't know you either but I couldn't read your posts and said nothing.
I am not sure how old is your ds but I know (close relative) that the only thing your son will see is his mum. Not a woman who is struggling to move or even one that is in a wheelchair if that ever happens. He will see the mum who is able to give him cuddles, the one who is getting excited at his last school performance, the one who is proud of him, of who he is and what he is doing. The mum who loves him.
And I know that nothing, not money, not more time, not less caring, is ever going to replace that.
I am not sure what to suggest. There are already lots of good ideas on here (incl looking at your diet).
Re acupuncture, is there someone doing community acupuncture (also called multi bed acupuncture) around you? People are treated in a 'communal' room (a few beds in the room), and treatments are much cheaper. Quite often practitioners doing that have a sliding scale and will let you choose what you can afford to pay. If you google it with the name of your town, I am sure you will find something.
Hello Korma - I am new to the site so haven't seen your earlier posts, but I do have inflammatory arthritis, and a number of other co-conditions, including of course, osteo arthritis. I was diagnosed when my children were 5 and 6, a couple of days before Christmas, and as a result of sight problems linked to the arthritis. It was very scared, particularly as the eye specialist was an insensitive idiot, who told me I'd be partially sighted and disabled within 10 years. That was over 20 years ago, and I am neither of those things. I take serious medication, which helps me live a normal life (mostly). I'm about to take my dogs out for a 4 mile walk, which confirms it's possible to be reasonably fit and healthy when living with arthritis. I joined an on line support group for folks with the sort of arthritis I have, and found it very informative and supportive. I have a friend with Rheumatoid arthritis, who was diagnosed when her daughter was 4, (daughter now 18) and she also lives a good life. This diagnosis is a life changer, but the support you get from occupational therapists, physio, rheumatology etc is excellent, and the medications available now help prevent the joint deformity and disability you fear. If you want to PM I'll be happy to share any useful information I've gleaned over the years.
Korma, I.have no experience of your illness so can't really comment on that although I can see that there are plenty of people that can advise on here.
Sadly what o do have experience of is the suicide of a parent, my dad took his own life 20 years ago, I was 18, my brothers were 16 & 14 and my sister was a baby, just 14 months old. None of us have ever got over it. It isn't the answer, it really isn't. What I also know is that I would never see a family member with an illness or disability as merely a burden, the people who love you will still value you regardless of your ability to join in with the physical stuff.
I could do with losing a pound or
seventy two myself so if you want a diet buddy then I'm your woman, maybe focussing on that for now will distract you from the bigger picture until you're ready to deal with it?
Morning, I have emailed my friend and have pm'd you her response!
So glad you feel a bit less desperate, yes your son needs you so so much, and there will be stuff that helps you to live a more normal life.
Pm ing you now! x
Korma. Stop right there!
The prognosis for PsA is not nearly as bad as you fear for the vast majority of people.
Many people don't have the joint deforming version. Those who do are treated with really good drugs from the rheumy and lots of people get it limited just to a handful of joints. There are drugs that really slow down the progression and allow people to live normal lives again. They will look after you well.
Hi Korma, you won't know me because I've changed names a lot. I don't have your degree of problems - hypermobility joint syndrome with some arthritis from that plus neuralgia.
I've been close to where you are when I was getting daily migraine and couldn't see a way forward - but getting on top of that with the right medication has made a difference. It still gets me down when I think of the things I probably won't be able to do again - stupid things like going on a rollercoaster with ds - but I'm ramping up my control-freakery to do what I can with exercise and diet.
I hate the bloody limitations.
Want to be weight loss buddies? I have a small shed load to shift which isn't doing my joints any good...
I was very ill last year, I struggled to maintain some normality for my DD11 for her sake. Her biggest memory and worry though(she tells me now!) was that I lost too much weight (actually got down to my dream of being a size 14!) and didn't look like chubby mummy any more, thanks kid! We still went out to eat, they ate and I had a cup of tea, we still went out to places, she ran round and would sit and watch and encourage.
Compromise, it is not about making the best out of a bad deal. It is about finding a new way of being. When you are a child and think you will grow up to be a princess one day then a firefighter the next, we accept this. But we struggle with this in adulthood too much. We get settled into our idea of who we should be, this is too fixed and we need to be more flexible to take life's knocks. Last year I had to come to terms with no longer being running around organising mum, no longer being doing everything mum, playing on the park mum, going on rides mum. I adapted and became confidant mum, quite talks and cuddles. Sorting out problems, telling great stories, helping with homework, thinking up craft activities....I did not loose who I was I adapted and changed.
You need to find who you now are. You can now be the cool mum who arranged the best play date with great games for the kids to play. Mum who can help with all the problems. Now you will have to more creative to find ways of being the great mum you are, and your son will love you for it. He will see you changing and becoming more than you were before. In ten years time he will see the effort you put in to this and worship you for it. Make him proud and he will never be ashamed of you. This is your job, enjoy it and take this challenge, because you don't really have the option of leaving him...and I think you know that in your heart.
Just wondering how you are today, Korma.
Try for yourself and your gorgeous DS.
Good luck korma.
Use whatever motivation you need to get you through the initial adjustment, whether it's strangers on a screen or watching ds grow up...
Take it one day at a time, you will find a way to get through this.
You can PM me if you need anything.
Korma my mother is almost 80, has severe RA, and has just had a hip replacement. Neither me nor my siblings see her as a burden. She's just Mum. We do what we can to support her. Full stop.
Hang in there - you are loved and would be greatly missed if you were no longer here.
I have a friend whose dad has had RA for more than 30 years now. He says that people now are much more lucky than him as they have found much better treatment for RA than in his time. He is very optimistic re the outlook for people who have just been diagnosed.
As I said he has had RA for a very long time. My friend has never know her dad working but has learnt to know hospital and the NHS very well indeed.
And for her, dad is just dad. The fact he has been disabled all her life, the fact he has been in a w/chair for a while now doesn't make a difference. Neither for her nor for her 3 dcs.
Korma I do realize that another diagnosis like this is hard to swallow. But I am sure you will find a way through it, a way to enjoy yourself, your life. A way to be there for your DH and dc too. It doesn't have to be a practical way. (Actually 'non practical ways' are usually a much greater support).
I hope you can find strength in these posts. Please carry on posting if it helps too.
Hi korma I have arthritis and other health problems I just want to say I am here if you need to talk.I also filled out my own dal forms and received high rate for care and mob. If you need any help filling them in via email I could help. Please take care, hugs xxx
I hope you can enjoy some of today OP.
I so know where you are coming from.
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