When someone you love is seriously ill, there's a relatively standard mix of difficult & painful feelings, and issues. Grief. Fear. Anger. Frustration. Sadness. Worry. Often guilt. But when you're also seriously ill yourself, it complicates things almost to the point that it's impossible to convey your feelings, (never mind deal with them!) because they're all mashed up and interwoven, and it's hard to separate out each individual strand, like fairy lights, retrieved from the loft just before Christmas!
When my mum was first diagnosed with Multiple Myeloma 4 years ago, I was very ill, housebound ... but it was a better stage than most of the last 8 years. Mum was in hospital for many months, on and off ... including one pretty long stretch when she had a stem cell transplant and was in isolation. At the time we hoped, of course, that she would come through it and go into remission ... but we didn't know anything for sure, and I was really scared that I would lose her. My whole family was really struggling. I'm the oldest of 3 children, (my youngest sister being a full 10 years younger than me), my parents were at the time in their mid 50's ... and I felt responsible for keeping everyone else afloat. There were so many roles (most of which were natural for me, some of which were just plain hard work) that needed to be stepped into, and which I wished to carry out. I guess I was going for the full on martyrdom, and not in a good way!! I used my stress and the affect stress has on my body, forcing my intense adrenaline rushes into overtime so that I could visit my mum every couple of days, support my family, inform and liase with my mum's friends and relatives. It's my default stance ... the carer mode. Except that, of course, I was still struggling to cope with my own illness and disability.
I had ... and have, thank God, an amazing best friend, (I'll give her an alias, I think, as I'm not sure she'd want to be identified online, and I imagine I'll probably talk about her a fair bit in the future. So ... she'll be known as Anna) who's my carer and very much a part of our family. I'm not sure I'd have survived the last 8 years had she not been here. We're each other's rocks, in many ways, and the things we've been through together have brought us really close over the years! She supported and loved me through that difficult time, and I'm more thankful for her than I can possibly express!!
I knew, though, that everything I was doing would have a backlash on my health. My screwed up adrenaline kept me afloat in the short term, but around the time my mum was finally getting better, and things slowed down for us all, my body crashed in a big way, and came to a grinding halt. I've been bedbound more often than not during the years since then.
Now that my mum's illness has come back, my first instinct is to fly into that overstressed 'super-hero-aspiration' mode - but I just don't have the choice to even try it, this time around. I'm completely bedbound ... have been for about a year and a half this time. I can barely manage to make it to the bathroom ... never mind to the hospital to visit my mum.
The first time Myeloma darkened our doorstep, I'd say my primary emotions were grief and worry. (Though there were certainly many others in the mix too!) This time, guilt is overshadowing every other emotion to the point that I can barely feel anything else. I do know that it probably isn't fair to myself ... and that my mum would never want me to feel that way (just as she wouldn't have wanted me to run myself into the ground for her last time!!), but it's hard to teach yourself to react in a different way.
I feel guilty more than anything because I can't visit my mum. I talked about it with my dad last week, and he suggested, kindly, that I should just give her a phonecall every few days ... I had to admit that I can't even manage that right now. I felt ... feel ... so utterly useless and really, really embarrassed to admit that. It's hard to explain how conversation, especially over the phone, can be so completely exhausting that it's basically impossible. How can anyone possibly understand that?? I've been managing to email her short little messages several times a day ... and I
think mum more or less understands why I can't do more, and that I'm trying my best. But I can't seem to stop myself feeling like a failure. I own those insecurities, though, and I'm trying to teach myself that it's ok to not be able to do everything ... that I don't have to be perfect. Not an easy lesson to learn!!
I feel guilty that I can't help out around the house, do the cleaning and laundry etc for my dad. (Anna and I moved in with my parents, and my younger sister who still lives at home, a while after my mum went into remission. With my mum and me both unable to work, neither of us having much money in savings, and struggling to pay our mortgages, we decided to merge our finances by me buying a share in their house. So, I sold my home and we moved in. We lead fairly separate lives, though it's not a large house (I have one room, as does Anna, with shared bathrooms and kitchen), partly because I'm not able to spend much time with people as it wears me out so quickly, within just minutes at best ... & partly because my body clock is reversed so we're up in the night rather than the day. In the normal run of things, Anna, my mum, and my sister share the household chores... but we eat separately and do our own laundry etc. I'm unable to do any of that work right now, and with my mum now unable too, it's a pretty big burden on Anna especially, on top of caring for me ... and being sick herself. (She has had Post Viral Fatigue Syndrome for a year now, and we're both hoping with everything in us that it will clear up soon and not turn into something more insidious - you all know what I'm talking about!!!) My dad works really hard, often into the evenings, and now of course he has to fit in a hospital visit each day too. The one thing I desperately want to be able to do is breeze through the house, cleaning as I go ... but I can't, and I have to watch my friend and my dad struggle, instead. It's
beyond frustrating.
It feels really complicated, dealing with worrying about my mum's health at the same time as so much going on with my own. (My blood pressure issues seem to be getting even worse. The things the doctor promised to do have yet to materialise - though I've managed to get hold of her email address and am hoping the email I've sent will push her into action! The extra stress on top of all the normal stuff seems to be making my pain worse and is sapping my energy. My neuro issues have been getting really bad ... struggling to communicate because I keep forgetting so many words and losing track of what I'm saying half way through sentences.) And of course we're all very aware that this is a long term situation. (Mum has started a new treatment this week, which has just recently started to be used for Myeloma, called
Velcade. It's shown some great results for Myeloma, so I'm really happy that she's able to receive this treatment!)
The situation is complicated even more by the fact that until my mum got ill, she was actually helping Anna with some of my care. Not huge things, but little things that build up, like feeding my dogs, taking Kiya to the vets, (Kiya, one of my westies, has a severe chronic skin problem and needs regular vet visits) and doing a bit of my laundry. In essence, I've lost a carer, which while Anna is ill also, isn't the best of situations. We don't know how things will go with my mum's treatment, of course, but we certainly can't count on mum returning to her former amount of mobility - and in any case, the likelihood is that it will be a fairly long road back to recovery.
I felt horribly guilty that my 60 odd yr old mum was caring for me anyway ... and then she got ill and I can't help but worry that her doing those extra jobs could have put extra stress on her body and put her into relapse quicker than might have happened otherwise. And now I feel guilty that I'm also worrying about myself and Anna because mum can't help us anymore. (Not to mention worried that the extra work for Anna will make her sicker too!) I do understand in my 'head' that these are reasonable concerns, but in my heart, I feel guilty, like I'm making it all about me when it should be about my mum. It's just such a horribly complicated and interwoven situation!!!
I just wish things were different. I wish I could be the carer instead of the one who needs to be taken care of. I wish mum's cancer had returned at a time when I am able to do more ... or that I hadn't pushed myself so hard last time. I wish that the NHS had done more for me over the years so I hadn't ended up in this position in the first place!!!! I wish my family understood a little better what I'm going through so that I didn't have to worry that they feel like I'm letting them down. I wish I wasn't a burden on the people I love! .... But these are all things that I
can't change. What I
can change is my response to the situation, and to my own feelings.
I'm trying really hard to deal with this in a more positive way this time ... in a way which lets my family know that I love them and am supporting them, but without doing any more damage to myself than I can help. I'm working on not beating myself over the head with guilt ... no easy feat, but I do realise that it doesn't help anyone for me to do that, and that it wouldn't really be fair to myself either. So I'm trying instead to take care of myself too ... whether that means talking about how I'm feeling, looking after my own physical health, or simply eating cake with Anna! ;)
Guilt really is a waste of effort, and I don't want to waste any more of my time on it! All the same, it's pretty difficult to stop feeling it!!
I'm really glad that I've started to be a bit more open about my health problems and how ME affects me, over the last few years, so my family do at least have a bit more understanding of my illness (my mum especially) This would be a much worse situation had I not got a bit braver!! I also feel very lucky to have got hooked into the ME community over the last year or so, because you guys are all so amazingly supportive!! I'm thankful that I have people around me that I can be honest with. I hope you all realise just what a massive difference you are making to my life! :)
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
Guilt : Trying to Find a Healthy Response
