Guilt : Trying to Find a Healthy Response

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!

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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!!

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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!!

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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!!!

photo by missrains	via PhotoRee

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

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So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

With all the media rubbish about 'ME/CFS' that's intensified over the last couple of weeks - not to mention the recent changes to the UK benefits system which are going to make things much harder for those with Neurological ME, I've found that quite a lot of frustration has come to the surface which I usually try to keep more or less buried because it takes too much energy to deal with all the emotions.

Something I really hate is that so many people, particularly in the UK, see M.E. as some kind of 'malingerers disease', where we enjoy sitting around being lazy each day, living the high life, never having to bother with work because of our state benefits!! And well, you can't blame them, in some ways, because that impression has been thrown out into the world at every opportunity, through the media, medical schools, psychiatric research projects, and the opinions of the benefit agencies & insurance companies - not to mention the chronic over-diagnosing of this illness, where people who are not neurologically ill are given a diagnosis of ME, (Or rather, ME/CFS) when they are actually burnt-out, depressed, or in some other kind of fatigue state. But the truth of the matter is that those beliefs expose an inherent ignorance about what life is actually like for those of us with severe ME.

I've spent the last 15 years hiding as much of this illness & it's affects as is humanly possible from the people around me, out of shame and fear. It shouldn't have to be that way. We sure wouldn't expect someone with Cancer or Aids to feel they have to do so, right? And I don't want to be that person anymore. I want to get used to being more honest about what I'm going through instead of pasting on a smile and pretending I'm fine while you're here ... then crashing the moment you walk out the door!


I've had M.E. for 15 years now, & I don't think I could even begin to explain the utterly devastating affect this illness has had on my life. I lost a career that I loved. (nursing in a NICU unit, which I fought to keep pursuing for 8 years after I first became ill, despite extreme exhaustion & pain - I certainly don't think that is representative of a person who is looking for an excuse to not work.) I lost the ability to have stable & secure finances; the chance to find a partner who loves me, settle down, and have a family; a whole host of friends who couldn't cope with my complicated situation; my house - as disability benefits (benefits that I actually had to go to tribunal to get, because the doctor who 'examined' me didn't believe in M.E) didn't bring in even near enough money to cover my mortgage (At age 34, I now live in one room of my parents house - a high life indeed!); I've also lost the entire last 7 years of my life (for which time I have been housebound, very often bedbound. For the whole of the past year, I've been unable to even sit up in bed for more than a few minutes at a time - and even that causes pain & extreme fatigue afterwards.); My social life; The ability to walk my two dogs who I love more than life itself; and the right to live with dignity and respect are all gone now too - & that's only the things I can think of off the top of my head!

If one of those people who believes I'm just a malingerer could spend just one week living my life, there's no question in my mind that they would change their position.

Right now, about the only contact I have with the world around me is either through my carer, or on the internet. (I count myself lucky to have that ability as there have been many times over the years when even that was impossible!) Believe it or not, I found out a couple of days ago, on facebook, that my father (Whose house I live in) is making the move to self-employment. I barely see him for a few minutes a week - and the result is that I have no idea what's happening in the lives of my loved ones.

If I manage to go to the bathroom more than twice in a day, then that's a very, very good day. Two times a day is normal - and even that is a battle! I fight with my own body to have a shower once a week. It often takes me up to 2 hours because the crushing fatigue is so disabling that I have to rest every few minutes even using a shower chair ... but I'm too stubborn, proud, and guilt-ridden to ask for help. (though there have been periods in the last few years when I've had no choice but to have my carer help me bathe - Trust me, that is NOT something I would have put up with if I could simply make myself well again with exercise, diet, therapy, anti-depressants, etc etc etc!!!) I'm then wiped out for 2-3 days afterwards. I can't remember the last time I wore make-up regularly, I haven't had a proper haircut in years ... we just take a pair of scissors to my pony tail when it's getting annoyingly long.

Speaking of guilt, that's something else you wouldn't want to live with. My best friend before I became severely ill, has now been caring for me for the last 7 years. She's amazing and I literally couldn't survive without her, but I live every day with the guilt of the burden I'm placing on her. Worse, she's now developed post-viral-syndrome herself, & I can't help but be worried that she may have picked some viral trigger up from me. In addition, since my carer has been so ill, my 60yr old mother has had to start helping out with my laundry, and other jobs, only a few years after she herself became ill with Multiple Myeloma. The pain of all that guilt sometimes feels almost unbearable, like a physical weight on me!

I live everyday in pain, rationing my painkillers as well as I can because I hate taking them. (Another guilt to live with!) Dull pain, Sharp pain, numb, buzzing, urgent, weighted, spasms, migraines - the list goes on!) Sometimes my pain is so extreme that even wearing clothes or the weight of my (lightweight!) blanket on me is too much. I struggle to spend even a few minutes talking with a family member, and crash right afterwards. Light hurts my eyes. Noise hurts my brain. Both send me into a state of overload where it feels like I'm being interrogated! I have blood pressure drops when I stand (or even sit) that make me feel like all the energy is draining right out of my feet. Intense adrenaline rushes, followed by huge crashes. Palpitations. Crazy sweating - as though I have a bad fever only I don't. Insomnia, hypersomnia, (Oh, the irony!!!) sleep cycle reversal. Actually I have a list of symptoms so ridiculously long, (I haven't even got close to naming them all here!) that I felt stupid when I recently presented it to my doctor - who basically had no idea just how bad things are for me as I can rarely make it to the surgery, and she's unable to do home visits. (& this is one of the best doctors I've had since I became severely ill.)

At my worst over the last 7 years, I've had years where the vast majority of my time has had to be spent in a darkened, quiet room, staring at the wall. I've had months where on my worst days, I would be paralysed for hours at a time, not even able to lift my finger, never mind reach out and take a glass of water to drink.

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My neuro symptoms drive me insane. (Haha!) I swear my iq has dropped 50% since I got sick. I can't remember things, (including both old and new memories) I can't recall words, or I come out with the wrong one. (That of course is providing I can actually find the energy to speak at all) I have brain fog so severe at times that I trip over my words and certainly can't make my mind focus on something I want to do, no matter how important it might be. I can't fill in a form by myself. I can't make my mind up about anything. I have problems hearing speech, or the tv, not to mention making my mind understand what's being said. I constantly zone out. A simple conversation with my best friend is exhausting and after a few minutes I just can't concentrate anymore, and my body starts to feel the post-exertional malaise - cos yes, even mental activity can set that off! (The brain is a muscle, after all, which requires energy to function!)

On top of all that, there's been loneliness, grief, sadness, anger, the inability to attend funerals and weddings, or important family events, Christmas days spent in bed. And the stigma, judgement & ignorance of people who don't understand (& aren't willing to try because of all the negative media about M.E.), not to mention medical care that can barely be called care. It's more than enough to boot you in the chest when you're really down. This illness just eats away at you, your life, & your coping abilities. It destroys family life. It damages your sense of self and worth. It takes away the liberty to be the person you feel really are.



How can anyone who's never lived with M.E. ever really understand what a price we pay to live this 'high life'??

Nobody chooses to live this way. It's forced upon us - and we have to learn to deal with it. The only other option is unthinkable - and we fight that option along with all the other fights, for the sake of the people who love us - and because we really do want to find enjoyment & happiness in our lives.

I just wish that the people spinning ME as a psychiatric illness would stop and listen for a moment. Choose to care about us as individuals and realise that something much more is going on here.

Why doesn't medicine learn from past mistakes. Parkinsons, MS, Aids, Epilepsy - so many illnesses, all treated with disbelief, prejudice, and cruelty, & labelled without scientific proof as hysteria, depression, hypochondria, etc. Those previous beliefs were proved to not only be wrong, and unjust - but also stupid and dangerous because so many people died before the medics and governments started to pay proper attention - not to mention the millions of lives which were wrecked in the process.

ME patients are talked about in the media and amongst medical circles as 'radicalised' conspiracy theorists, which I find highly offensive - but really, why would anyone be surprised by how strongly we feel about this and how hard we're willing to fight to create change??!!?? We're desperate. It's that simple. I've been living with ME for 15 years, and in that time, nothing has really changed - the same old stuff is happening over and again. I'm not radicalised, I don't send 'hate mail' or bomb cars, for heavens sake. I just don't agree with anyone who says that my illness is all in my head, and I'm willing to say so.

And that's my epic rant complete. (Sorry about the crazy length!!) All I can do now is try to move on, to pick up the pieces all over again and deal with the emotional fallout of this latest injustice ... and remind myself that change will come! Facts & evidence will eventually appear that are absolutely irrefutable, like they have for other illnesses before ours, and action will have to be taken.

What have your greatest losses been over the course of your illness?

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! :)

So I'm a Malingerer, huh?? Warning, bit of a Rant Ahead!!

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