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Where can I find support for partner/family of PSA sufferer?

CherryPieCherryPie Posts: 4
I can't believe I'm actually going to admit this - but I'm really, really struggling with my husband's illness.

His symptoms started just 6 weeks after our wedding. He was diagnosed with PSA just over a year ago. He started on methotrexate in January 2013, when I was two months pregnant with our first child. We are in our early thirties...

Long story short - the methotrexate is not working and it's making him really sick. He is injecting it now and then he feels awful for days. He constantly has a cold or feels sick - and he is tired all the time. The next step is to combine it with some other drug, apparently, but I'm having to face the fact that.... he's not going to get better, is he?

He doesn't have the energy to spend any time with our daughter, who is now four months. He comes in from work and he just wants to lie down. He is on amitriptyline for the pain, which makes him sleep so deeply, he never handles any night wake ups/ feeds. He is miserable, grumpy and ill - and I don't see an end in sight. I'm exhausted and....

.... and angry. There, I said it. I'm deeply unhappy. This isn't the man I married. This is not the life I signed up for. But I love him and I want to support him, I really do. In sickness and in health, and all that. But I don't know where to find the strength and the patience - not when I have been up eleven times in the night with the baby and yet HE needs a nap. Not when I haven't slept through the night in four months and he promises me a Sunday lie in - but then he is too ill to honour it. Genuinely too ill. We never have any fun together any more - he is too tired to even speak to me some evenings. How do you stay loving? How do you keep giving? How do you cope when you know that this is your life now? Forever?

Where can a partner or family member find support? I am in the West Midlands area.

Thank you. And thanks for listening.

Comments

  • daffy2daffy2 Posts: 1,713
    edited 30. Nov -1, 00:00
    Hello CherryPie
    I'm just a forum member, not one of the Helpline Team, but just wanted to say welcome and sorry to hear you are struggling. I imagine it took a fair bit of courage to admit how you are feeling but sometimes just making that admission can be helpful. I don't know if you have looked on the AC Home pages to see if there is a local group/contacts? There are different drugs to treat your husband's illness and it can take time to find the right one(s), and with luck as your daughter gets older your lack of sleep will improve, and you will have more reserves to deal with the situation.Have a look at the ChitChat and Living with Arthritis sections - there are giggles to be had on the former and information on the latter.
    Keep posting, folks here will understand when you need to let off steam.
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    I, too am just a forum member, not a member of the Helpline team but I do agree with daffy's wise words. We are constantly reminding each other on here that arthritis affects the whole family albeit in different ways. You have just illustrated that perfectly.

    The best advice I can give is to keep talking. I know that will be so difficult when your husband is constantly exhausted and in pain and you, also are exhausted and possibly feeling as if you are bringing up your little one alone. He will feel guilty for not 'pulling his weight' and you, clearly, feel guilty for admitting your frustration and anger. All of this is perfectly natural and all too normal but, if you can each keep saying how you feel, in sadness rather than anger, you will at least be sharing the load.

    It takes a long time to come to terms with a diagnosis of arthritis and to learn how to deal with it. That applies on both sides of a relationship. Why not actually ring our Helpline people? They are good listeners.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Boomer13Boomer13 Posts: 1,931
    edited 30. Nov -1, 00:00
    Dear Cherrypie;

    I'm not a helpline person, just a forum member.

    You've done the right thing for yourself finding this forum. I would echo daffy and suggest posting in the living with arthritis section, as there are lots of experienced people here who may be able to help you through what is obviously a very difficult time for you and your family.

    Things may improve for your husband when he gets onto a different anti-TNF med. You didn't say if he's tried others. Unfortunately, it's trial and error to find medications that help the individual person.

    I have PsA and although it's me that is sick, my husband has had to do everything for our little family at times. He has not always handled this well and we very nearly split up over it a few years ago. He now says it's his illness too, as he has felt a lot of my pain and dysfunction over the past 8 years. He's had to adjust his thinking, and after all this time, still gets very frustrated when I'm too tired to talk, or have to bow out of a function, or other obligation. Things can and will get better, but they may not be the way you hoped they would be at the start. It truly is an awful illness, my heart goes out to you and your family.

    Best wishes to you. It's a very difficult thing adjusting to chronic illness. Talk to people on here, it will help.

    xxAnna
  • KittkatKittkat Posts: 309
    edited 30. Nov -1, 00:00
    Hello
    I wonder if your husband would benefit from some counselling and if you yourself would benefit from some counselling?
    Perhaps your husband could join a forum if he hasn't already there is this website arthritis care and psoriasis help forum where he can talk to others and vent how he feels.
    Hopefully as well his condition will improve I hope it does. There is no reason to say he won't improve in the future. My dad has had some awful ill health that my mum has had to put up with( severe ulcerative colitis) and he is fine now. So although he may have arthritis 'forever' its impact may not always be so severe,Take care x
    How am I gonna be an optimist about this?
  • CherryPieCherryPie Posts: 4
    edited 30. Nov -1, 00:00
    Thank you so much, everyone, for your replies. I have to confess, I was terrified to check back here in case I had a load of "stop being so selfish" replies which part of me still feels I deserve. Your responses have touched me beyond words. Thank you.

    As far as his medications go - they tried him on various anti-inflammatories first and, when that didn't work, he was referred to the hospital who gave him methotrexate. That was January. We started to see a little improvement initially but then it tapered off and then, when the baby was born in July, his skin psoriasis and the pain all flared up really badly (stress related?). They just keep increasing the dose of methotrexate. We asked about other medications at his last appointment and they said they would consider something called Embrel but ONLY when they've exhausted all doseage options for the methotrexate because, apparently, Embrel costs the NHS £9k a year. I mean I get it but.... yeah.... :cry:

    The advice to keep talking to each other about how we feel. Umm... I know that this is good advice but how do I say any of this to him?? I can't! He's already got enough to feel rubbish about without me admitting that I feel like this. He takes everything so personally anyway, without me admitting that actually, yes, I am completely miserable and, yes, his illness is the main reason.

    I went to the doctor today and told him how I'm feeling. I asked if there was any counselling I could access. He made me do this questionnaire thing about whether I eat properly and how many times a week I think about harming myself. He concluded that I'm not depressed and so he could not refer me. It's amazing how little support there is, huh?

    Boomer13, thank you for sharing your husband's experience. It's a huge weight lifted to hear that I'm not the only spouse that has felt this way and to hear that you were able to work through it and stay together. I guess it is our family's illness now.

    Again, thanks everyone.
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    You certainly don't deserve any 'stop being selfish' replies, Cherrypie. You are a young mother struggling with a small baby and a newly diagnosed husband. Both of these situations are difficult in themselves let alone put together. As a mother, who has RA, I can identify with both of you.

    What does of methotrexate is your husband currently taking? Sometimes they start low and increase very slowly. It might be that other things could be thrown into the mix. Many of us are on double or triple therapy. I take both hydroxychloroquine and meth and together they work well for me. There are other DMARDS too. Enbrel is and anti-tnf med. Usually patients have to fail on three DMARDS before trying an anti-tnf. I don't think the only problem is cost. I think, potentially, the side-effects of anti-tnfs can be worse.

    The talking can be a real problem for all of us. We who have the disease don't want to be moaning about it all the time but, if we're not careful, our other halves end up feeling completely shut out. They, on the other hand, can feel (like you) wary of mentioning any problem at all in case they over-burden us. I do strongly recommend a babysitter, a nice meal, a bottle of wine and a good heart to heart with no blame or repercussions just sharing the pain on both sides. Your pain is also valid. Otherwise, the things not talked about can form a huge chasm which then becomes very difficult to cross.

    I don't know whether you are – officially – depressed or not, Cherrypie, but it seems to me you have much to be depressed about. Keep talking – to us, to the Helpline, to friends, to anyone. Don't shut it all away. If necessary go back to your health centre but ask to see a different GP. ((()))
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • helpline_teamhelpline_team Posts: 2,019
    edited 30. Nov -1, 00:00
    Hi CherryPie

    Thank you so much for your posting and I apologise that it’s taken a bit of time to get back to you.
    I’m so glad to see you have had such supportive and understanding responses from other forum members.
    All the emotions you describe can be really difficult to deal with. Feeling exhausted can also exacerbate how we feel.
    Stickywicket suggested talking to your husband without being angry, and I think that’s a good point. Sometimes it’s how we say things that can make a difference.
    I wonder if you are able to share your feelings with any family members or friends. Would you be able to have a couple of hours alone with your husband, maybe having a meal together or something where you could have an opportunity to talk in a calm environment.

    Below is a link to Arthritis Care publications ‘Coping with emotions’ may be of interest:
    http://www.arthritiscare.org.uk/PublicationsandResources/Listedbytype/Booklets/main_content/EmotionsbookletAug10.pdf

    This link is to Arthritis Care groups throughout the country, at some point this is something your husband may like to try:
    http://www.arthritiscare.org.uk/InyourArea/CentralEngland/Contactus

    You say that you went to the doctor regarding having some counselling and they concluded you’re not depressed.
    You are most welcome to give us a ring on our Helplines 0808 800 4050 (Monday-Friday 10am-4pm) we can chat to you here informally and in confidence. I know this isn’t the same as ongoing counselling but it may be another way of getting support.

    As mentioned by the other forum members you might like to take a look at the ‘living with arthritis’ forum http://arthritiscareforum.org.uk/viewforum.php?f=8 another great way of sharing experience and getting support

    It’s always so very difficult to live with uncertainty and deal with emotions that at times we don’t want to feel. I hope by gaining support from the forum and ourselves you will feel there are certainly people out there for you who care!

    I do hope this is of some help

    Best wishes
    Lynda
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Oh my lovely, what a brave girl you are to confess your feelings and rest assured we are an empathetic audience. All of us on here are fully aware that our troubles affect those around us - it puts a pressure on us too. I suspect your man is very well aware of how he is failing you in a time of great need - my arthritis began three months before we got married but luckily we are two old codgers for whom children was not an issue. (Bad pun, Daisy, I aplogise. )

    There will be a financial consideration when it comes to the 'big guns' of the anti-TNF meds - I am on my third and final lot, once this one stops working I am out of options. No matter. I began them far too late, I spent years failing on the standard DMARDs and NSAIDs but I hope that your husband's hospital will take a more enlightened view. MIne does, now they get people onto them within six months because the outcome can be so much better. All this, however, does not help YOU.

    Please ring the Helpline people, they are very good listeners and do not to be afraid to post on the Living with Arthritis part of this board because you too are living with this pernicious disease. Your perspective will be beneficial to us and maybe help us in our relationships. I wish you well - you need some care now and I hope we can help on that front. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • CherryPieCherryPie Posts: 4
    edited 30. Nov -1, 00:00
    Thank you Daisy. I really hope you are right about our hospital - it took them three months for his first appointment to come though and he has been on methotrexate for ten months now with little improvement so I'm not hopeful. I'm so sorry to hear that they haven't found a drug combination that works for you yet. I will keep my fingers firmly crossed for you.

    Thanks to all your replies, I brought the subject up with him yesterday - not in all it's "boo hoo, our life is ruined" glory but in a constructive way (I was able to because you all let me sound off. Thank you).

    It turns out that he has not been going to the gym (he started going for a little while last year to help his joints) because he feels guilty leaving me alone with the baby for an extra hour a few days per week! The gym makes him feel so much better - and when he feels better we are all happier! Duh! So that's something we can change for the better.

    We are also going to eat more healthily - we have got into a terrible rut because he is too tired to cook and he doesn't want to suggest healthy meals for me to cook because he doesn't want to burden me further! So he says "let's get pizza/chinese/chips". And I presume he actually *wants* this stuff and so go along with it. We would both feel better if we ate better!

    He also has been missing his amitryptaline frequently because he feels guilty not being able to wake up with our daughter at night. He still doesn't wake up (!!) but the result has been that he has been a little more depressed than usual (he takes it for pain but it is also an antidepressant). This all adds to the fatigue and inability to cope.... That's something else I can impact. If i bring it to him every night maybe he will see this as my blessing to keep taking it?

    I didn't realise how much he has been wearing himself out trying to *do* things until he pointed it out last night. And of course he has been failing miserably to meet our actual needs (hence the original post) because he doesn't realise that what we want is an emotionally present, fun daddy - not one that does DIY or laundry! I don't mind taking on a bigger share of the parenting and the housework if it means he spends more quality time with us....

    I really do think that happier times are ahead....! Thanks so much everyone.

    I will keep using this forum because, as someone who sent me a PM said, we are just at the start of or journey (ugh! I really thought he would be better by now! Shows what I know about the real world!). Who knows, maybe I can be of some support to someone one day?

    Ali xx
  • stickywicketstickywicket Posts: 25,994 ✭✭✭
    edited 30. Nov -1, 00:00
    I'm so glad things ate working out a bit better for you all. It's all too easy to stop talking for fear of burdening the other person when sometimes a good chat will actually relieve the burdens a little on both sides. This is something you'll have to keep working at, Ali, because, believe me, it's so easy to drop into the trap once again. I've had RA for over 50 years and been married for 45 and we still have to work at it

    If the gym makes him feel better and if he doesn't overdo things there that will be good. I guess the temptation will be to try to prove to himself that he can still do all he did previously (Men do tend to) but hopefully he'll realise that, at least until he gets settled on meds that work well for him, that's not too realistic an aim.

    I've no doubt you'll feel better if you eat healthily. Arthritis Care have a booklet on Healthy Lifestyle which involves a sensible diet. It doesn't have to be too time-consuming and leftovers can be frozen for another day.

    I think you're both dealing with all this very well and sensibly. Please feel free to 'use' us any way and any time we can help. I'm sure you are already 'of support' to two very important people and you're doing a great job.
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • daffy2daffy2 Posts: 1,713
    edited 30. Nov -1, 00:00
    So glad to hear about the progress you've both made so far with discussing the situation you find yourselves in. It just goes to show how trying to second guess someone else's feelings can make things very complicated! There is a fine line between being thoughtful, and making decisions for the other person which are not perhaps ours to make - at least not without discussion. My ex tended to do this about minor matters such as which part of the country we would be living in!
    Are you able to get out for coffee/lunch with friends as your equivalent to going to the gym perhaps? Distraction is a useful coping strategy not just for physical pain...
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