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Both spouses with chronic conditions

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Helia
Helia Community member Posts: 4 Listener
I am writing this because I am a bit unsure whether I am reacting as I should to my spouse.

She has fibromyalgia and has had it for a good number of years now. In the last week she has been having an episode, she wakes up with hand pain, and walking causes pain to feet and ankles, and she said also that she had pain at her hips at some point today, which I never heard her say before.

I got ME after COVID two years ago and I have not recovered.

She has had to give up work a few years ago, while I still work but I HAVE to work from home and only 4 days a week. So she does house chores which, for the most part, don't have any deadlines and it's all pretty relaxed. Lunch and dinner have deadlines but we are careful to buy easy meals we can put in the oven or sometimes order food in. But if she doesn't feel well for a while things pile up, and I am not able to both work and do house chores, although I do help with dishes and other things when I can.

We both have periods where we think overall we are improving, and then we might still get episodes despite our best efforts to manage the pain/fatigue. She doesn't get the fatigue part of the fibro btw.

Because we are not wheelchair bound and we CAN get out of the house, even if in small spurts, I guess we always hope we can get better. But we don't, and are occasionally reminded that. And I think that's what is kicking her in the teeth today.

Today we were discussing blinds in the conservatory, like everyone, we are looking into ways of saving in energy bills. We got this house recently and didn't realise just how cold/hot the conservatory gets in winter, but now we have been here for both extremes and are trying to make sure we don't bake.

But as we were talking about the blinds, she started resisting the idea, and the reason is that she feels isolated enough as it is, and not being able to see outside the conservatory makes her sad. Keep in mind also that we don't really have a panoramic view, we just see our wooden fence and some trees.

She has been battling with depression and has had talk therapy, so yes we have been taking steps for that part. She was very emotional about these blinds. I tried to explain that the blinds only need to he down when it's really hot or cold, not for the majority of the time but she'd just say that she is not very stable from an emotional standpoint right now, and, while I know it's not what she is trying to do, I do feel a bit held at ransom to that sometimes.

I also am not able to socialise as much, in fact I see people less than she does. If it gets too hot in the house like it did in the last heatwave, I am not able to work. I'll get tired quicker, I risk making mistakes, and if I am not able to bring money in, then we'll be more depressed because then we can't afford food and bills.

I have times when I want to cry but I seem to be able to rebound quicker from that than my other half. I truly understand that mental health needs to be nurtured as much as physical health, but getting so much kickback for having some blinds that you only close some days tires ME out, and makes MY situation worse when I am also going through an episode. I have been unwell for a couple of weeks and only starting to resurface, but I still work and have to meet same day deadlines.

She gets overwhelmed for what I feel is a lot less stress (house chores), but she has also lived her disability for a lot longer than I have. I just struggle to empathize when that happens and wind up responding something along the lines of, "I am not sure what to say [for example in the case of the blinds] can you sit outside for a bit instead?" We do have a garden. But when she is in one of these emotional struggles there is just little I can say that helps.

I am not saying that keeping up a house is not a lot of work. It IS. I know that, and I have taken time off work to help her when she couldn't do it and I never get angry if a room is looking untidy because I know neither of us could do it. Either I was tired from work or she was in pain.

I try to support, so for example today I offered to go for a walk, thinking maybe it could help her out given that we had to close the blinds. I was not feeling very energetic and now I need to rest in bed a bit and am struggling with doing a simple task at work, but I am trying to helpful, and compromise, I really am.

And yesterday, I was feeling really rough in the afternoon, so she told me to stay in bed and gave me some water and brought me whatever I needed. She also supports. It's not that she doesn't. But it's when I get those responses that go against even things like making the house comfortable so it's not difficult to be in – given that it's often the only place we can be in, that I get frustrated and I don't think it helps.

Any tips?

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,650 Disability Gamechanger
    edited August 2022
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    Hello @Helia and welcome to the online community, thank you for taking so much time to explain about your situation in detail, I really appreciate it and acknowledge that these sorts of things aren't always the easiest to open up about.

    Sorry to hear that you developed ME after having Covid, that can't have been easy to go through. How are you and your other half feeling in terms of the support you receive to manage your mental and physical health? You mentioned that your partner has had talking therapy, and I hope that went well for her, but do ensure that if either of you ever feel as though you need more support to manage you get in touch with your doctor or medical team.

    Have you discussed with her how you feel at the moment? I acknowledge that it could be a sensitive subject and not the easiest conversation to have, but perhaps it may help if she knows how you feel about things. You sound like a lovely, caring person based on what you have said here, and it sounds as though you love each other very much, so maybe talking it through might be an option that brings positive change. Mutual understanding can benefit both sides, as it makes it easy to adapt behaviour and know how one another may be feeling and why that might be causing certain reactions.

    Of course, if you don't feel as though it is a safe enough environment for you to discuss things, you could always consider inviting a loved one to sit in on the conversation, or look at couples counselling.

    You mentioned sometimes not being completely sure of what to say, which I totally understand. Just as a note, she may not be expecting you to always know what to say, I appreciate that when someone we love is upset you want to have the answer, but every now and again people just need space with their thoughts and a bit of alone time. As long as they know that you care for them, and that you are there if they do want to discuss how they feel, it isn't always necessary to know what to say all of the time.

    I hope you enjoy taking part in the online community, if you have any questions then don't hesitate to ask.
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  • Helia
    Helia Community member Posts: 4 Listener
    edited August 2022
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    Thanks @Ross_Scope :)

    We do talk generally, but I think it's a bit difficult with her depression sometimes. I think this is something I need to try to talk to her about. I just need to figure out how to approach it.
  • Sandy_123
    Sandy_123 Scope Member Posts: 55,759 Disability Gamechanger
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    Hi @Helia a welcome from me. Have you searched the market for blinds, as you can get see through ones, like a magic screen, you can see out, noone can see in and there's lots of choices out there, that might work for you both.
  • Helia
    Helia Community member Posts: 4 Listener
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    I have searched yes, and that's what we are fitting. The problem is not the blinds themselves, it was an example :)
  • Jo_2022
    Jo_2022 Community Volunteer Host Posts: 297 Pioneering
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    Dear @Helia,

    My heart goes out to you both  <3. I am so so sorry to hear about your ME and your partners pain and depression. That must be a huge weight on your shoulders.

    Yes the situation does seem a little tricky, and sometimes tactfully responding to someone with mental health issues can feel like walking on eggshells. It appears that you both really care about each other, and you seem to be doing the right thing.

    I would suggest that you try having a calm conversation with your wife about your feelings, and try to rationally explain to her any concerns you may have :). I know sometimes relationships can become difficult when one or both people are living with pain, and lovingly nurturing each others needs is not always easy.

    Community Volunteer Host with a passion for human rights.


    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

  • elahrairah
    elahrairah Scope Member Posts: 49 Courageous
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    Its been a while since this post, but it chimed a lot with our situation.  We're now a two disabled person household, neither of us can work anymore, before I worked part-time because I was too ill to work full time.  Now I'm the healthy one and am a full-time carer.  It's been (and is) a struggle to keep our heads above water.  We don't have any friends or family in the country, we'd only just moved here.  Now we're trying to be covid safe in a country that is pretending thats not a thing, and trying to survive when the government's official policy is to try and starve us into dying or taking any job no matter how inappropriate.  I have no social life, no friends, no support network, no money, and no hope of anything improving.  I can't drive so our world consists of anywhere we can go within half-an-hour that doesnt have many other people in, has appropriate toilet facilities, and is reasonably flat.  Thats our house, the local graveyard, and a secure dog field we rent for an hour a week. 

    The one thing that makes all this worse is not talking to each other.  I find that I don't want to talk about how miserable I am, in part because it feels hopeless, and in part because I don't want her to feel guilty or responsible.  We often find that without talking to each other, we experience our situation completely differently and that makes it far more likely we will upset or be prickly with each other.  So you need to talk and be honest and open and not fighty so that you both feel able to talk about it.  This is hard, being a carer is difficult, being a disabled carer is quadruply so.  Doing it alone in your head just makes the hard time harder.  This is something I need to remember!

    My partner is a positive sociable person and she has formed all sorts of online relationships in the chronic sickness / long covid online world where they support each other and discuss their conditions and she seems to get a lot out of that.  (I could do with something like that for carers with borderline and depression and anxiety.)

    This is way longer and more personal than I intended but there you go.  Take care of yourself!
  • Cher_Alumni
    Cher_Alumni Scope alumni Posts: 5,734 Disability Gamechanger
    edited October 2022
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    Hi @Helia and @elahrairah

    I just wanted to check in with you both to see how your situations are going? Although different, I can see some correlation between them and I can imagine holding space for your partner's feelings, as-well as your own, can be tricky to say the least. Throw in the outside world and the challenges of covid-19, the cost of living crisis, etc and you're left with a lot to process. It's hard. I hope reading others are in similar places offers some comfort that you aren't alone in this. 

    Have you managed to talk to your respective partners some more about your situations? And also, would a GP referral for some private talking therapy for yourself be beneficial do you think?

    I hope you have a lovely Friday and weekend. Please keep us posted with how you're getting on.Take care.
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  • Helia
    Helia Community member Posts: 4 Listener
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    Hello @Cher_Scope

     thanks for the check in :)

    I have had a chat with my other half since and we are communicating when we struggle (or trying).

    We also put together a plan to help with outstanding tasks that she might struggle with especially when she gets overwhelmed.

    We also waiting for some referrals to carer support groups, to see if there is any help/tips as we are caring for each other.

    Things have improved though, there was also a medication that was giving her trouble and changing that actually improved things a lot.
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