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Helping my Partner

Posted , 6 users are following.

jaryg27
jaryg27

Hi everyone.

Firstly, pardon my ignorance on all issues AS. I'm rather new to this.

I'm in a relatively new relationship with a woman who has recently been diagnosed with AS. She's been perfectly open about it, and we've discussed the illness in depth. She's a positive, capable, and courageous woman, and i know she's perfectly capable of dealing with AS by herself, but i'd like to do my part to help her, too.

I'm looking for advice from those with more experience than me as to how best i can support her.

For AS sufferers - what do you require, or desire, from your partner in terms of the care, assistance, and emotional support they give you? Is there anything your partner does for you that you find particular helpful? 

For partners of AS sufferers - what actions, both physical and mental, have you found to be a particular help for your partner? I've read many stories of sufferers falling into depression, becoming introverted and distancing themselves from their interests. Is this common, and what might be effective in avoiding this?

Thanks in advance for any information or advice. It's greatly appreciated.

0 likes, 4 replies

4 Replies

  • emm2
    emm2 jaryg27

    Posted

    Hi there I have as and my partner is brilliant since everyone is different I dont think there is one answer.for me patience and understanding when im having a bad day,understanding when im being stubborn when I know I cant do something.when things are going well treating me like a "normal" person and letting me get on with things.

    Sometimes when things are really bad help getting me out of the bath,dried and dressed as this can be difficult.making the tea and generally making sure the housework is done etc and collecting prescriptions.the main advice I would give is talk about what help she wants from you have patience and understanding!

    Big hugs to you both

  • popeye62
    popeye62 jaryg27

    Posted

    Fair play to you good luck to your girlfriend .I am a as sufferer driving is a big issue for me I'm good for 20 mins then I have to stop walking bathing getting dressed on the top step of the stairs.i am on good pain management morphine patches pain killers and inject once a week.it as taken the wife and I a long time to suss out what o can and carnt do.she is my rock mind you because of the trouble sleeping I go into our spare room every night about 2 no point spoiling her sleep so she spreads out.just remember your partner's moods it's down to pain they are as frustrated more than anything how do you explain pain.i carnt.good luck to you both just make sure she gets every help with the right meds.

  • ted07101
    ted07101 jaryg27

    Posted

    You want to help your partner to be positive on AS ? I have this since 24 years old I am now 61 , massage her remedial hydrotherapy movements, but this is autoimmune disorder , is no easy to manage this , some TNF blockers work then stop , I use sulphazaline plus Celebrex I was on TNF for long , exercise helps good nutrition and lots of compassion the AS means the immune attack the spine try to fuse it attack eyes anything , inflammation, apart of what you can do found a good reumatologist and talk plus do some blood tests like ESR CRP , the Markers for inflammation, everyone is different, it is no easy disorder to manage , my viewpoint they need to do more research and found more safe drugs some use remicade others HUMIRA others Enbrel others Concentyx 150 and try to treat it like any disorder but there is no cure of this if control exist is okay this is genetic disorders or as they call them blood disorders, the white cells mistaken attack wish you well 
  • bob75564
    bob75564 jaryg27

    Posted

    laryg27, I am a sufferer and a partner, as my wife also has AS.  My son also has AS.  I think what is needed is different for everyone.  I am fused in the sacrum and the thoracic spine.  I am on Simponi, a biologic, and take an injection every 6 weeks (I started at every 4 weeks).  This controls the pain, unless I get hit with a flare up.  On the biologic I an pain free for most of the time.  With my last flare-up, I was in excruciating pain for three months.  Sleepless night and had to ice my neck two or three times each night, when the pain was so bad I could not stay in bed.  My wife also has chronic back pain but has not been put on any biologic.  I would tell you to just be aware, listen to your partners comments.  Read about the disease, learn all you can, and be supportive.  I am now on a diet that helps the body control inflammation.  My wife is also following the diet.  That helps, mentally and physically.  Good luck.  Bob
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