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Concerned partner looking for advice

Posted , 5 users are following.

l90956
l90956

Hi all, I'm new to this forum and was hoping I could gain some of your advice on how to support my partner.

He was diagonsed with Sarcoidosis 3 years ago and I have been with him for over a year now.  Admittedly, when he first told me about it I had never heard of the condition before and If I'm being honest, I don't think he knows as much about it as a lot of others who are also dealing with it.  Since it's been 3 years and he feels as though he's only feeling worse, he is certain it's not going to get any better for him and avoids researching due to any stories he might read.  So ever since he told me towards the beginning of our relationship I have researched it as much as I could to be able to understand a bit more. I will never be able to understand fully what you guys deal with and go through, but my hat is off to each and every one of you fighting it every day.

My partner has good periods and bad, and usually I've been able to determine where I can help, be it ensuring there are healthier meals available to him when I'm not around (we do not live together), to doing the mediocre tasks such as cleaning the kitchen, hanging up laundry and making the bed.  I've always had a somewhat understanding of this taking a toll on him mentally however I'm really concerned about him this time around.  He recently dropped his preds back down to 10mg a few weeks ago and has since spiralled into a sort of depressive state.  He used to distract himself with his career and goals he wanted to achieve, he was so incredibly passionate about his job, but he says he no longer cares and has lost interest in most things he used to enjoy.  I hadn't seen him for a couple of weeks and I got a bit of a shock when I finally did, he didn't look himself at all, and I feel like noone else is noticing, not his flatmates, his friends, colleagues, parents.  None of them are fully aware of how he feels daily and he's started to shut himself away and just occupy himself with the laptop all the time now.

I figured who else better to ask than the people who have been, and are in his shoes for advice on anything I can do to support him through this period?  I won't mother or push him into anything he doesn't want to do, but it doesn't seem right to sit and watch as everyone else is oblivious?

I appreciate anyone taking the time to read this, and I wish you all the very best.

1 like, 6 replies

6 Replies

  • tangles
    tangles l90956

    Posted

    Hi

    This condition can get you down mainly because there are so few answers and even fewer directions for this condition.

    He needs strong support from a good friend like yourself.

    He has to shake himself up and then decide he is going to give it his best shot.

    Demand answers from the doctors, if they do not have them then who will they refer him to so that he can get answers. Respiratory specialist needs to be involved, lung function tests and steroids. Return to good health is slow but you must be vigorous in perusing it or it will slip away from you. That seems to be where he is? Ask him what he wants to achieve in life and what steps he is taking to get there.

    Give him a big kick in the rear end...so depression does not set in. It is not the size of the dog in the fight that counts it is the size of the fight in the dog that really counts. Hope you get what I mean.

    Today is the first day of the rest of your life.

    Wish you both well...keep in touch

    ​ Tangles

  • vicky87908
    vicky87908 l90956

    Posted

    My Mum just died this week - she was 84 years old and has sarcoidosis all her life.  She was extremely driven in her career - getting as far as assistant matron, widwife and ward sister in nursing.  She led an active life enjoying children and grandchildren and she had stage 4 sarcoidosis.  Don't lose heart. 
    • Newton
      Newton vicky87908

      Posted

      sorry for your loss Vicky, she sounds like an amazing lady
  • Newton
    Newton l90956

    Posted

    Hi

    From my own experience I think it is really important to have a specialist who knows about sarcoidosis. Not just a 'dabbler'. The uninitiated tend to under-treat and don't recognise the importance of symptoms outside their specialist area.

    Sounds like he has reacted badly to cutting down steroids. That really resonates with me: I got stuck at 12.5mg for months and couldnt get down without adding extra drugs (methotrexate). Every time I have dropped steroids, even by 1mg, a couple of weeks later I feel exhausted, low and stiff stiff stiff. Its then easy to get depressed about the things you cannot do (i was even sad that I couldnt hang out the washing). Your partner needs to discuss with his GP, take these posts to show him/her. That in itself can be difficult as he doesnt people to see how difficult things are. I hold down a busy job, but every morning I lie in bed wondering how I'm going to make it through the day.

    Wish you all the best, and keep posting to keep us in the loop.

    Big ups to all my Sarchums out there! Newton

  • jae34528
    jae34528 l90956

    Posted

    Hi -- I'm new to this site - day 1- your post caught me. Your concern and care for your partner's plight is especially touching because your approach is refreshingly positive. You have already received excellent info from Tangles, 1Vicky87908 and 2Newton.
  • l90956
    l90956

    Posted

    Hi everyone.

    I apologise for the lateness on replying, I couldn't get back into the account, and in all honesty I didn't have anything good to update you with.

    I want to thank you all for taking the time to reply and offer me advice.

    As for the update - he continued to shut me out, to the point I wouldn't hear from him any longer.

    I wish all of you the very best, and thank you again for taking the time to tell me your experiences and offer advice.

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