new relationship - future talk

Kateb Member Posts: 4
edited 30. Nov 2015, 15:36 in Living with Arthritis archive
I'm wondering if anyone else feels the same way.

I have chronic stills disease. It flares about every 3.5 years, each flare getting progressively worse. between flares I take nothing. To look at me there is nothing wrong. When I flare I am completely dependent on those around me. Standard RA situation.

I recently fell in love. Everything was great, until he wanted to discuss the future. I don't do futures, I live for the moment. Hell, who would live for a future which contains an RA flare? Consequence? I think I've lost him.

He doesn't understand how I can possibly go from being independent and active to disabled and dependent in two days. He doesn't understand why I don't have dreams. I don't expect him to understand, but I know the future scares me. There will come a time when I don't get over the flare and live in constant pain. I would never ask anyone to stand by me when I go through a flare. I am a living nightmare at these times.

Am I the only one who doesn't look forward to the future?


  • moderator
    moderator Moderator Posts: 4,086
    edited 30. Nov -1, 00:00
    Hi Kateb,

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    It is a little quiet being the weekend, but I'm sure that someone will be along shortly to help.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    Do read and post across the different topics that you will find here.
    All best wishes

    Mod Yx
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Hello kateb and welcome to the forum :D

    This is a tricky one and, although we have Stills in common, I'm not sure I'm the best person to answer you as my life took a completely different direction. I was diagnosed at 15 (though it probably started at 11) and, like you, initially, in between flares I took little if anything in the way of meds. (Mind you, back then in 1961 there was very little to take :roll: ) The flares did flatten me. I went into school for my O-level exams and stayed in bed in between them. A-levels were similar but by finals (Yes, there was a pattern to my flares) I was better at dealing with them. Things got really tough after the births of my two sons but, with understanding from my husband and help from my mother, I survived. 40+ years, several joint replacements and constant proper DMARDS later, things are much better.

    What I'm trying to say is that the future doesn't have to be bleak. Yes, there is constant pain but we get used to that, don't we? There is also much fun and happiness and, for me, many trips abroad as one son lives in California.

    I think I was a bit blinkered when I was younger. I never looked too far forward. I always assumed things would get better when I was in a flare and that, somehow, I'd muddle through it and cope. And I did. My husband saw me at my worst before we married and it didn't deter him. He's 'stood by me' through everything since but then I've stood by him during his own – non-arthritic – bad times. I've always felt I've pulled my weight in the relationship and the marriage. Arthritis is a demanding beast and affects everyone in a household, albeit differently, but it's only a disease that we have. It's not who we are and it doesn't define us. We are much more than that.

    I can't know how important your boyfriend is to you or you to him. I think he should be aware of how tough things might get, temporarily or permanently, but, if he decides you're worth it, what's not to like about that? If, on the other hand, he “doesn't understand how I can possibly go from being independent and active to disabled and dependent in two days.” why not print off some of Arthritis Care's info to show him and / or take him with you for your next rheumatology appointment? I guess it all depends on how serious the relationship is but it sounds as if you might be jeopardising your own future happiness by not believing it's possible.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Oh dear. That doesn't sound like much fun.

    I met my husband and got engaged in weeks, he flew to the other side of the world and returned a couple of months later, ready for our wedding. One of our first official engagements as a couple was when he came with me to learn how to do methotrexate injections (he's never had to but I needed a person to learn with me in case I couldn't do it). Romantic? No. Practical and necessary? Yes. The thing is he loves me regardless of my physical appearance, my abilities on any given day and other such things.

    Don't feel you have to push people away because your arthritis scares you. Everybody in this world will have something about themselves which scares them and they think will put others off them. I once dated a beautiful man who was in remission with skin cancer, he thought that would put me off. It didn't. His poor time keeping did. :lol:

    Not doing futures is fine because we could all walk out in front of a bus tomorrow and have no future. Not allowing yourself some happiness because you have arthritis is torturing yourself. Don't do futures but do take leaps of faith, with arthritis they may be the only leaps we do take. Do be kind to yourself and love yourself regardless of your arthritis and it's activity level, you do deserve to be loved and have a happy future. The injection buddy is still here and although he may have the physical strength of ten men, I'm the one who often ends up carrying us through things on a mental level (like the scary stuff when small children are rushed into A&E). Part of the reason I can do that is because I have arthritis and I've had to be able to deal with bad times. You aren't one big liability because you have arthritis and a good relationship works with balance, so what if he may have to help you through a flare? Who says there aren't things you won't have to help him through? Don't do yourself a disservice, you do deserve a happy future whether you plan it or not.
    Hey little fighter, things will get brighter
  • Kateb
    Kateb Member Posts: 4
    edited 30. Nov -1, 00:00
    Dear sticky wicket and lignum vitae

    Thank you both for your posts. It is good to hear from people who understand my disability - probably more than I do. I'm very lucky as I have lived with Stills for 40 years, yet the flares are so sporadic I don't really understand them.

    You are right, the thought of my next flare terrifies me, which is why I try to live for the day and not think about the future.

    I didn't intend to fall in love and realising how I feel is just a scary as my next flare, but maybe the former can help me through the latter.

    Thank you again for your support.

  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    I think I made some assumptions in my earlier post which would appear to be incorrect. You said Stills, rather than Adult Onset Stills, and you also said you flared about every 3.5 years and didn't require any medication in between flares so I kind of jumped to the conclusion that you had only had it for about 10 years. If you've actually had it for about 30 years you are doing very well indeed if life goes on as normal between flares.

    I wonder if you actually see a rheumatologist regularly as I should imagine it would be difficult to get a quick appointment (and medication) once a flare starts. Has it never been suggested that regular meds might prevent the flares arising in the first place? That might help with your current dilemma. Though it is an uncomfortable, but valuable, fact of arthritic life that we soon find who are our true friends and, in this, I guess arthritis can be a plus. It soon sorts out the wheat from the chaff.

    I don't think it's possible to fully understand flares. Stress can certainly trigger them as can the hormonal changes post-pregnancy but surely other unknown factors too. For me, it's always been a matter of catching them and dealing with them asap. How do you normally deal with yours?

    To return to your original question, I've always found the best way of dealing with new friends of any kind is to be upfront but not to bang on about things. Having said that, since contracting Stills, I've almost always been incapacitated to some extent. I recall going hiking at uni but that didn't last long :lol: It must be much harder to explain something that isn't normally apparent at all.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Kateb
    Kateb Member Posts: 4
    edited 30. Nov -1, 00:00
    Hi sticky wicket

    I was diagnosed at great ormand street hospital when I was 3 years old, having stopped walking at 18months. When diagnosed my parents were told I would never walk and be wheelchair bound. My father persisted with the exercises and I was declared 'free' of stills at the age of ten. It returned after I had my son.

    I have, however adapted my life. My biggest trigger is stairs and I avoid them at all times. The looks I get when I enter a disabled lift! I live in a bungalow and always use the lift at work. Additionally I left the UK, but work seems to have plans to send me back next year. I am petrified. The plan is to send me to London and I know the tube is not disability friendly - nor is the climate.

    I manage flares initially through heavy doses of pred and ibuprofen, both which I carry at all times. The flares knock me for six as I stop walking within 48 hours and struggle to get the movement back for up to 8 months. I experience little pain unless under flare. I am really lucky, but I struggle with going from being completely independent (except being able to open jars or climb stairs) to being completely dependent in 48 hours. I'm scared of meths and have not been offered any other long term treatment plan.

    I am very lucky that I have medical insurance, so seeing too rheumatologists is not usually an issue - except even they have doubted if I have stills as there is no sign of it. One 'consultant' even told me I couldn't have stills as I was underweight and could touch my toes!

    I cannot tell you how much I have appreciated the support I have had this weekend. If and when he gets in touch I think I need to explain the spoon theory to him and the decisions I make every day - despite currently being 'healthy'. I need to explain that when he talks of his plans to return to his three bedroom house in the UK it makes my heart sink as I know I cannot live there. I need to get him to realise that I love today because tomorrow may be a bad day and to realise how his future plans will need to adapt if he wants me to be part of them.

    Hey, if he can't change his plans then he is not the one for me!
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Hi Kate
    It's good to hear that the forum has been of help to you. Your chap is, I suspect, having problems of his own with this situation, and being a male isn't well placed to talk about them. He will have no idea what your condition entails or its impact on 'normal' life, and no idea of how well he will be able to cope. He might feel guilty if he opts out of the relationship now because of his concerns about coping, but even more worried if he stays with you and then finds he can't cope after all, or might be dealing with things by not thinking about them - 'it'll all be OK'. Although ideally there should be compromise on both sides, as the move back to the UK is going to be a much bigger issue for you than him, I would be inclined to concentrate on making that work for you. If he is the one for you then he'll wait and work round what you need to do. But don't think too badly of him if he decides that the relationship isn't for him - better to be honest and hopefully part on reasonable terms. If nothing else this experience has perhaps opened a small window to a view of possibilities you had up to now ruled out for yourself.
    Keep us updated.
  • stickywicket
    stickywicket Member Posts: 26,270
    edited 30. Nov -1, 00:00
    Your poor parents! How devastating to have ones child stop walking just after she has become quite proficient at it. Great Ormond St has an excellent reputation but I'm not sure I'd go along with telling parents their child will never walk again. Hats off to your father for his persistence.

    It is possible to outgrow juvenile forms of arthritis and it seems you did have a very welcome break from it until after your son was born. As for the diagnosis – you are younger than I am and diagnostics improve all the time though there are no infallible tools. I have long suspected I simply have RA but it makes little difference now.

    Moving house, let alone country, has to be very stressful. Chuck into the mix the worries about an important relationship and no wonder you are anxious.

    I find the consultant's comment about your not having Stills 'as I was underweight and could touch my toes!' frankly bizarre. However, there are some who seem to know very little about the outer reaches of autoimmune forms of arthritis.

    I have honestly never heard of stairs being a trigger for any kind of arthritic flare but you know your own body.

    I can only say what I would personally do in your situation.

    1. If possible, find a rheumatologist, near where you are going to live, who specialises in Stills.

    2. Ask him / her about the relative wisdom of not taking a DMARD and taking large doses of steroids and anti-inflammatories when flaring. (Unlike DMARDS, steroids and anti-inflamms won't prevent joint damage and both can bring their own problems.)

    As for cans – an electric can opener is my solution :wink:

    Good luck :)
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran