I suppose I am feeling sorry for myself this morning and have been in tears this morning, because my husband, has a referral to see a consultant in rheumatism next month and has come to the conclusion that he has Rheumatoid arthritis.
He has always been very active and has enjoyed many hobbies, which I have found difficult mainly due to my having ms and for many years I didn’t know this, plus I’d rather read a good book.
My husband uses his hands to mend things in the house and works as a maintenance guy for a school (part time) as he has me to look after me and his hobbies are close to the school. He’s in his early 60s and has a few years yet till he retires.
So what I’m asking is how do you cope when both of you have an autoimmune disease. Life looks grim from where I’m sitting.
S**t happens, doesn’t it!
Don’t despair. Life goes on, just a bit differently and you (both) sort of evolve. Hubby was diagnosed with Fibromyalgia almost ten years ago. Very debilitating. Chronic fatigue, actual pain, inability to walk for any long distance etc etc. My ms was diagnosed last year, completely out of the blue and totally unexpected.
I suppose it’s a bit like losing the use of your predominant hand…you end up using the other one quite well to compensate. It’s okay to feel sorry for yourself now and again, jus don’t dwell on it. “Life looks grim from where I’m sitting”…? Then stand up!! Throw open those windows and breath deeply. Smile. Even to yourself…it will make people wonder what you’ve been up to! Write a list of all the positives in your life right now, however small. (I am not alone with this, I have a husband?)
Things will be just fine and tomorrow’s another day.
think it important to keep your m.s. and husbands rheumatoid arthritis separate otherwise you are both going to be bogged down with both conditions.
Hi Corkie, My husband was dx with ankylosing spodilitis (arthritis of the spine) when he was in his thirties and he will be 60 next years. Over the years he has had really bad flare ups where the pain was so bad that he had to sleep on a chair for thee months as he couldn’t lie down.
His life was transformed when he started humira injections and now he doesn’t get any pain but he tires easily and he walks with a stoop. He also had to have a hip replacement because of it.
I was dx with SPMS 8 years ago. Over the years I have deteriated but thankfully slowly. We both work my husband full time and me part time. How he does it I have no idea as his job is quite physical but he just seems to keep going.
We just seem to muddle through with everything and try not to worry too much about anything including the future but I am concerned as he keeps on at me about getting a wheelchair when we are out and about as it is getting harder and harder to walk and I am terrified about tripping. I really don’t want him pushing me as it might make his back worse so I keep putting it off. But it’s really exhausting.
My youngest daughter also has ulcerated colitis and she has recently been dx with arthritis caused by the colitis and she has just started on tablets so we are really hoping they work as she is only 28 and at uni.
All the best to your husband. Try not to worry as there is treatments out there.
Thank you very much for your replies, I know quite a lot about fibro and spodilitis and both are very difficult to live with. In fact I was thinking he may have fibro as the symptoms are very alike RA. I suppose I am worried about RA as my mum became quite bitter to people around her, my dad and myself and I’m hoping that my husband (who is already quite bitter at times) doesn’t go down the same route (his brother committed suicide 11 years ago) after many years of pain and depression.
You are right that we’ll probably muddle through and I can see some good things that could come out of this, just hope that he’s still able to use his canoe which he hasn’t been able to do this year.
Once dx he should be able to get some appropriate drugs but I wishe he’d look after himself better, lay off the bad diet but of course when I mention this, he doesn’t want to know, so I’m buttoning my mouth and that’s hard.
But thank you for your answers you’ve made me feel a bit better about the whole situation, life goes on, guess we’ll look for that sheltered housing flat that we were planning to move to, preferably by the sea.
We moved into a flat last year and because it’s a brand new flat it’s all geared for wheelchair use in the future. Wide doors, no steps etc. It was a wrench moving from our old home but it had to be done.
We have a pragmatic view to our illnesses and get on with what has to be done. Don’t get me wrong we both have some black days which we allow ourselves to have and I have days which I seem to spend all my time swearing. In fact I find my husband an inspiration he hardly ever goes on about his illness and I say to myself if he can do it so can I. He also gets support from the ankylosing spondylitis forum.
Thank you Mags, my husband’s the same, he’d rather just get on with life, once he has some help with the pain, I’m quite he’ll just get on with things.
I’m pragmatic too, I have lots of help from scooters and rollators and my house is adapted with wet room and a lift. I like to make my life as easy as I can and try not to feel sorry for myself but seeing him struggle is a first for me. Still these things are sent to try us.
Hi, My mother in law was diagnosed with rheumatoid arthritis when she was 60 was really active, she is now taking medication 15years later is still really active goes dancing, joined a walking club, once she found treatment what suited her and control the pain she could carry on enjoying her life.
Thank you Simon2 I am hopeful that my husband will get some help from the consultant, I did think there were some drugs that could help him.
It will be life Corkie, but not as we (used to) know it.
I had just had Transverse Myelitis when my wife had to attend the Falls Clinic.
By the time I had my MS Dx, she had her Parkinsons Dx.
She still has falls, has feet problems, and is losing her self-confidence.
I have an FES, a rollator, have had a stair-lift installed, and a few other bits of MS related hassle.
You will cope