Living with ankylosing spondylitis at 32

rpringle

Hi there,

I wonder if anyone can help. I'm writing on here on behalf of my husband Richard who's 32 years old.

My husband Richard is an amazing person. He's bright, outgoing, extremely positive and yesterday, for the first time, I saw him at a very low point. I feel like I need to go out and try and find other people similar to him to share his experiences with and seek support.

He is an extremely sporty person, and has excelled in many sports from badminton, rugby, kickboxing. He used to be a personal trainer.

About 2 years ago, Richard was diagnosed with AS and we have seen his condition deteriorate. This condition has made an almighty impact on Richard's life and the only sporty thing he can do now is swim - it's the only sport that doesn't cause him too much pain and discomfort. And so Richard swims 5 to 7 times a week as he feels much better for it.

Richard has been signed off work for the last 2 weeks as he begun to seize up at work where he is office based and does consultations. If he doesn't move his neck unsupported for just a couple of minutes, it begins to seize which is terribly painful and stressful for him.

Despite all the aches and pains, Richard rarely grumbles. He's amazingly positive and we always look at life from the perspective that you play the best you can with the cards that your dealt. So we've been going though the last 2 years, living with AS, accepting it and trying to adapt to it so that we live a life as enjoyable as possible despite the hard times.

But yesterday, Richard reached an all time low and expressed his worries to me. He worries about the future. About the overwhelming tiredness. He has to have a doze every day at about 3pm and most nights he goes to bed at 9pm. He worries about having children some day and how we will cope. He worries about what he can do work wise as he is a civil servant and his workplace have already changed his role to accommodate his condition but even with his latest role, he suffers pain and discomfort hence his GP has signed him off. He worries about years down the line, what he'll be capable of doing.

I just wish I could do something to take away the constant aches and pains. His swimming helps. He has had 3 or 4 cortisone injections in the last 2 years but that only lasts a couple of days. His physio has been doing a mixture of massage and acupuncture but again, this lasts only a couple of days and costs us £39 a visit which, on a weekly basis, we do not have the money for. At the moment we are waiting to hear whether Richard can trial anti-TNF. We're scared about Anti-TNF - can anyone advise us on this subject and their experiences?

I feel like Richard needs to find people of a similar age with similar experiences to share his concerns and seek advice on how to manage. I'm there for him 200% but feel maybe someone else with AS or similar might help?? I've found an interesting workshop being run by Arthritis Care in June and September about Challenging Pain which I've enquired about.

I wondered if anyone knew of any support groups near East Sussex that Richard could attend? Ideally, it would be great for him to link up with AS sufferers similar to Richard, as in young and extremely sporty.

Sorry to go on and on. I just don't know where to go and want Richard to live as happy a life as possible with this condition.

Thanks.

Jen

joyful164

I have had to stop swimming because of my neck problems. I know there are other strokes you can do other than breast stroke and the crawl but doing the back stroke is a very unsociable stroke in a busy swimming pool.
I can swim on my side and I have tried going to the aqua robics, but had to stop this because it was putting pressure on my heels and toes and was aggrevating my Psoriatic Arthritis.

Until my 50th birthday (I am now nearing my 65 birthday) I use to play badminton quite often and up to my 40th birthday at competition level. I use to love tennis but when I got my first bout of tennis elbow I had to give this up for badminton. I can fully understand what your husband is going through. Can he play table tennis?

I was referred to an Occupational Therapist and Physiotherapist by my consultant and GP. I expect you have gone down this road though.

I am sure the others will probably give you much better advice and help than myself and perhaps a posting to the helpline would be a bit help too. Everyone is so helpful on this forum and you will have plenty of friends in similar situations. good luck

All the best
joyful

eckstardeluxe

Hi, hello to you and Richard. I found myself emphasising with you both as I am also a civil servant and was diagnosed with my condition 5 months ago when I was 32. Now 33.

I competed at National Level at Gymnastics, Baton Twirling and Swimming. I ran 2 marathons and did the Moonwalk twice, last time 2 years ago. (I did this without knowing I was in the advanced deterioration stages of OA) I remember being at the start line saying to my friend "my back is bloody killing me" and feel so dumb now that I never thought anything of it. I was still circuit training after my first child. I think illness hits those who have been active or sporty very hard. It is depressing to think what you can't or won't do.

But, recently after taking a good hard look at myself and my activities, I realised my back pain is just the same as it was back then. It is my other conditions affect me but the arthritis pain is the same, I realised since I found out I have arthritis, I suddenly stopped being active thinking I was making myself worse not realising it was being active all those years that kept me from finding out I had arthur until I was at end stage. The Drs said this is very rare, they usually see people at early stage.

I think Richard is doing the right thing keeping active. He has a good employer who will reassess him when he goes back. Don't let his illness put you off having children. My children are 1 and 3. I was in labour for 10 hours with advanced arthritis, again never knew. It was this that brought my condition to the fore, but I would do it all again for them. Yes, I can't run around with my children, but now I focus on things I can do like painting and stories and games. You sound like you care and admire your partner very deeply, I am lucky to have one just like you. You will help him through, my husband compensates physically for what I can't do and we have two very happy children. Actually, because of my illness my daughter is asking questions about it and very respectful when she sees other disabled people. They will learn at an early age not to be prejudiced towars people and I think this is a great thing to come from my illness.

I hope Richard feels better soon. There will be bad days, but you just pick yourself up again and try and stay postive, when you have children it is easier to do this, so please don't let this put you off. Take care both of you. xxx

lindalegs

Hi Jen,

I think that Eckstar has said it all really.

I'm 51 and have had RA since I was 27 and my husband and I have brought up two sons, who now they're adult are very sensitive to other people's needs and although I'm quite disabled, to them I'm just Mum. With children you'll find you adapt your life to theirs and to them it makes no difference whatsoever.

Keeping active is the key to AS, I have a friend who's over 90 now but has had AS for very many years and he's kept active by swimming and water exercises, he also joined a support group and that was very helpful.

I think you may find it useful to talk to the Helpline Team - number at the top of this page - and have a look around the site at pages such as In Your Area to find support groups.

Richard's correct medication will help him enormously, and yes there will be dark days but there will also be times when lovely things are happening - don't let the AS control your life, you both have to take the reins and realise that life has given you a few more challenges than most.

Take care.

Luv Legs

eckstardeluxe

Hi, just to add another something else that came good of a horrible predicament. I hope it doesn't sound like I'm a hypochondriac.

I had some very, very dark days, suicidal even. I was born with kidney reflux which they failed to treat for 5 years. I was tested on as a child for years. It caused significant kidney damage. I went in for a cystoscopy at 12 & caught a bug & this caused Osteomyelitis & a spinal abscess. After getting better I resumed my former sports & activities. After my daughter's birth I suffered post traumatic stress disorder relating to my childhood, nightmares the works, stuff I hadn't even known happened.

At my diagnosis I discovered the bug involved was MRSA & my arthur was all caused by this. As you can imagine, I was very depressed for a time & extremely angry. I just didn't know what to do.

I came here a very sad individual indeed & these people & this site have transformed me into almost my old chirpy self. Maybe if Richard feels brave, he might like to join us someday for a chat, there is no shame in being depressed. Secondly, I had always taken my wonderful hubby & parents for granted. Why? I don't know, probably just too selfish & caught up in my own little world and problems to appreciate them. Now I have the most wonderful relationships with them & it all happened after I became ill. My Mum & me had a difficult relationship as I blamed her for the past which I know now was wrong. She had thought I'd be like that forever. Good things can come from bad situations but it took this site and the posters to show me how. Take care x

elnafinn

Hi Jen and Richard

I see that Richard made a few postings last year. You seem to already have been given good advice. I would echo, phone the helpline - they will know what if anything is going on in your area and what courses etc are available or will be going on in the future.

Richard will be made very welcome, as last time, if he chooses to join us at any time and you of course as well. It does all come as an awful shock and he is young but in the end we have to find acceptance and carry on the best we can. I definitely go by the rule of "use it or lose it" and do daily exercises religiously, use the exercise bike daily and cycle around locally. I prefer cycling to walking. Would this be an option for Richard perhaps?

Perhaps Richard should try to live more in the "now" than use energy worrying about the future.

You are doing a grand job, Jen and you two are obviously well suited and love each other very much. That in itself is such a bonus. Love conquers all.

I wish you both well,
Elna

woodbon

Hello, It may not seem like it but, Richard has taken a big step in talking things through with you. At least now you have know what hes suffering. Their are places Gyms that have medically trained staff to help, I go to one (i'm 54) and some of the people are a lot younger, some a lot older. My GP referred me.

As for all the wor, there is help available from the Jobcentre, did you know they can spend up to £25,000 on making the workplace suitable? I don't know if that would help or whether you'v been to see an Employment Advisor there? If not, its worth a try, if you type in jobecentreplus and click on the disablity thread you'r able to type in your postcode and they come up with the phone number of the nearest person. Good Luck and I hope you both get some of your issues sorted a bit more and can relax! Love Sue

rpringle

Hi there,

It's Richard here and i just wanted to say thanks so much for all your comments.
I have a wonderful wife and had no idea that she had been on this forum and posted. Sometimes I do get a bit down and have a good moan and I think the other day things got on top of me a little bit.
I think you are right and I am going to try to live for the now and take every day as it comes.

Once again thanks very much and i will look into all the great tips you have given me.

All the best

Richard

eckstardeluxe

rpringle wrote:

Hi there,

It's Richard here and i just wanted to say thanks so much for all your comments.
I have a wonderful wife and had no idea that she had been on this forum and posted. Sometimes I do get a bit down and have a good moan and I think the other day things got on top of me a little bit.
I think you are right and I am going to try to live for the now and take every day as it comes.

Once again thanks very much and i will look into all the great tips you have given me.

All the best

Richard

Hi Richard and welcome to the Forum, it's wonderful to hear from you. It sounds like you have a very lovely lady who cares for you deeply. It is times like this when we suddenly find ourselves in a situation we could never have imagined we suddenly realise just how lucky we are to have these people. I think it is marvellous you are getting out and about swimming and keeping active. As I mentioned before, took a good look at myself and decided to start getting out and about again and going back to the gym. Try not to worry about work, not sure if you are employed by exactly same as me, but they will make sure they reassess and adjust everything for you when you go back. My manager said yesterday to me not to come back yet as she'd rather I had one long illness than come back and go off again. Yours will likely have the same attitude. So you take as much time as you need to get yourself better mentally and physically. And well done for coming on here. I never ever went on Forums before but in January I was desperate and joined and it was the thing that almost single handedly made the difference to my mood. Take care both of you. x