Sunday, 14 November 2010

Hello Darkness, My Old Friend....

Another bout of struggling to accept my fate at present.

Although I still like the heart rate monitor concept that I discussed in my previous post, it has done a wickedly wonderful job of highlighting my current limitations. I've found that my heart rate goes above my threshold just by standing up and goes through the roof I dare to walk around. I knew I was struggling but a part of me probably thought I was being over-cautious and could start to do a bit more. Seems I actually need to do less.

I think I am effectively going to have to turn the upper floor of the house into a bedsit to limit the journeys I made up and down the stairs. I still refuse to give up on going down to the ground floor in the evenings to have dinner with my girlfriend and watch a movie or whatever. Isolating myself up here is beneficial in many ways but the thought of being trapped here all day and night is pretty scary. However, it does make sense that I bring into my current living area all the things I might need during the day as exhausting myself to fetch a ricecake from the kitchen hardly seems sensible! It also forces me to think some pretty distressing thoughts about the future. What if the stairs become too much altogether? Move to a bungalow? Get a stairlift? Hopefully it won't come to that. Hopefully.

I find that how I manage to cope with being ill is extremely variable. At times I am calm and accepting, other times I get in a panic and other times I get very down and lose some hope for the future. It's not pleasant for me but I'm also very conscious of how difficult it must be for my girlfriend. She is very susceptible to anxiety and our whole future has been marked with a huge question mark. On the surface I think she is coping but I do wonder how much she protects me from, by giving the impression of managing.

I'm aware of the energy I spend trying to balance my needs with hers but sometimes it's simply impossible to do so. I'm also struggling with how much to discuss the subject with her. For me, this is my whole life and I do need to vocalise what I'm feeling. However, I also want her to not be constantly bombarded with my challenges. Also, she has said she isn't really ready to join me in talking about it all at length as she is worried how she will cope. I understand that and I understand that working on auto-pilot gets her through the day-to-day stuff so it's a tricky balancing act between asking her to join me in my world of boring and constant illness and trying to paper over the subject to give her a break from it.

I'm in contact with some great people who have had to deal with chronic illness for a lot longer than I have and they tell me I am dealing with things well and that my moods going up and down is to be expected. That's good to hear but I'm pretty hard on myself and often find I'm rebuking myself for not managing better. I know I have to be kinder to myself throughout this situation and it's something I continue to work on.

Off to listen to Hank Williams now - yep, that's how much I have the blues, haha.

take care,



  1. It's 'funny' because the PWME who are alone wish there was someone around and the PWME realise how difficult it can be to sustain a relationship when one of you is never well -- put children into the mix and it's even harder.

    As you say it's a constant juggling act for both of you: because you are a caring sort of chap you can't let yourself wallow and indulge and focus all your attention on The Bastard (wouldn't be healthy anyway) but on the other hand you need to keep assessing things. Can't say how it must be for your GF expect that I have been a carer ( foot/boot ..other way round) and that's hard too.

    All you can do is try to find some time together where you two are the focus (like you're doing with 'dinner and a movie') and not her and her cares or you and yours: otherwise the whole thing wobbles. You are already doing that so, you see, you are organised and thoughtful, like I said.

    Bl**dy difficult for all concerned when, suddenly, it all changes and the strengths and weaknesses, roles, goods and bads are all tumbled about.

    Stay strong and see if GF can get som esupport too from somewhere --- informal e.g. chums or formal --- counselling or Carer's support groups

    In the meantime break out the Hagen Daas (or the soya ice cream ) and put something funny in the DVD player

  2. Thanks Cusp - always love hearing your input on all of this :)

    I think you are right - this is just how things are and it's human and understandable to stumble and fall sometimes along the way of 'getting on with things'.

    I have suggested a carer's group to my girlfriend but I don't think it's for her, which is fine. In a way, it's a blessing she works full time in a demanding job as she can shift her focus for a while. I'm also really pleased that she bought a horse recently and I think that gives her so much comfort.

    Ironically, I haven't made it downstairs for dinner tonight as I've had a rough afternoon but the ice cream will keep for another day ;)

    Take care :)

  3. Hi Barry, my girlfriend also has a busy and absorbing work life and I think that does help her to just get on with things. I think she copes by being practical and doing as much for me as she can in terms of day-to-day things. She is not one for talking much (and often says her feelings don't matter) and we don't talk much about things like the future (pointless anyway), but we do talk about current problems such as issues with doctors etc. Over the years it has become much easier as her knowledge and awareness of the ME world and issues has increased - but it took a lot longer as she was not online like me every day!

    She stopped reading my blog early on as she felt uncomfortable with me writing about our life, but did not want that to stop me expressing myself. I do mention her infrequently as I know she feels it is too personal (I did not say anything private but it was still too much for her). I know at times me talking about stuff, which is my only way to process really, has got too much for her, as we deal with things so differently.

    I have been amazed both by her unwavering support for me (and belief in me that I am doing my best) and by her ability to cope with our very changed life. We have found that we still share good conversation, our sense of humour and interests regardless of whether we go out together and do things other couples might. We make the most of the bit of evening time we spend together, when often i feel a bit better than the daytime. As cusp says, this is the important part, finding things to enjoy together and escape to a certain extent.

    I think the internet and the friends I have met have allowed me to talk and vent to someone else other than my partner (though at times there seems there is a never-ending flow and she gets it too) and this is really helpful so as not to drain all life from her! We do share her work problems and frustrations and she does feel I am a great support to her too.

    Just hang in there, take cues from her as to when she is ready to talk about her feelings about the situation, and try not to worry too much. It is so scary when we are ill and feeling vulnerable to worry that our relationship will not stand this test, but trust in what you have and take each day as it comes.

    On a separate note regarding the heart rate monitor experiment, do you think you have POTS? I do, if you want to ask me anything please feel free.

  4. Thanks for sharing these thoughts ashy - you obviously understand this element wonderfully well :)

    I think we've created a mutually supportive enough relationship to withstand the pressures of my illness but there's alwyays a part of you that thinks "what if I'm holding her back?" or "what if she loses interest in me?"

    We all cope in our own ways and I'm a little too fond of the 'talk everything to the Nth degree' approach whereas my girlfriend is more practical and just gets things done.

    I do hope that the relationship is still very much based on what it was from the beginning - us supporting each other. I feel pretty confident it is as I still make sure we give focus to her daily concerns around work etc. But, of course, some days I just can't focus on anything other than feeling unwell. Thankfully those days aren't the norm though.

    Regarding POTS, I thought I had it and then I spoke to Lee Lee about his problems and decided I either didnt have it or had it to a rather mild degree, lol. I'm finding I can now get my heart rate to lower a little if I stay standing still. Of course I can't stay on my feet vey long but at least my heart doesn't just keep on rising like it did in the early days.

  5. Urgh, comment got lost... starting again:
    From what I can tell about you already I am sure you enrich your girlfriend's life no end.

    It is interesting that standing still is a bit easier for you, that is very much not like POTS! For us standing still is the worst thing as moving helps blood return to the heart rather than pooling out of our brain and into our legs etc!

    Glad you don't seem to have it, but it's something for your heart-rate monitor clad group to look out for. It is a set of symptoms that doctors can at least try to treat, if you can find a specialist who will give it a go. I have had great improvements.