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!!!

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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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Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

One of the severe ME symptoms I find hard to discuss in any detail & yet causes me huge problems, is what I call 'Meltdowns' - Essentially, super sized night sweats - though I can get them any time of the day or night, awake or asleep. It's an insane, shame making machine of clammy grossness, & generally makes me feel like I'm lying in a swimming pool, not a bed - NOT cool, and terribly embarrassing!

There are many causes for night sweats, including the menopause, other hormonal problems, neurological illness such as MS and ME, & even some cancers. For those of us with Myalgic Encephalomyelitis, it seems to be caused by a combination of our neurological problems with thermoregulation/temperature control, our immune dysfunction, and our endocrine/neuro-endocrine dysfunctions. You can read a lot more about ME symptoms on The Hummingbird's Foundation for ME - it's a very long list of ME symptoms so I suggest you use your browser search tool (ctrl F) to search for 'sweats'. There are several small sections covering it.

For me, 'meltdowns' come along or get worse with my body being especially exhausted, after overworking it, if I have adrenaline rushes, or tachycardias, and usually are associated with flashes of heat or chills, (& for some reason, for me, increased pain) and get worse with lack of sleep - ironically, they tend to make my insomnia worse because well, it's not nice to try to sleep in a wet bed, with your hair stuck to your head! It just keeps you from ever getting into the deeper stages of sleep, & ultimately can make me so wide awake that I haven't a hope of getting back to sleep.

Because of this, night sweats aren't purely a comfort issue - they (& the adrenaline rushes often behind them, because they're so exhausting) can easily cause a tidal wave of worsening symptoms. Despite that, none of my doctors have ever been interested in helping me find anything I can do to reduce or eliminate these symptoms. Goes back, yet again, to how once you have an ME or 'CFS'/Chronic Fatigue Syndrome diagnosis in the UK (& many other countries), you're essentially written off by the health service. There is very little of any substance doctors are actually allowed or encouraged to do for us.

My sweats sometimes get so bad that it basically doesn't matter what I do, I still wake up freezing cold in a bed that seems to have had a recent visit to the Sea. :p I'm not talking a little bit of a damp pillow - I'm saying my hair could literally be wrung out, and my bedsheets & especially pillows are absolutely drenched.


Awake or asleep, I can literally have sweat running down my face & drenching my hair like I've just run a marathon - & my head generally feels like it's been deposited in an oven! And as of yet, I haven't found anything that really stops it. It's all pretty awful physically, and added to that is the emotional factor. Sweating is in our society a bit of a taboo, especially if you're a woman ... and really, it doesn't exactly make you feel attractive. It can be really shameful and difficult to deal with ... makes you want to hide away in a hole & never come out - despite the fact that it's absolutely not our fault!! Just talking about this, I feel quite disgusting, and I'm struggling with finding the courage to actually publish this post!

I do have some coping mechanisms that help me copy, which are worth mentioning. (Note, I'm not going to link to any of the products I'm about to discuss, as I don't want it to seem like I'm advertising them. It's just a list of things that help me - that I want to share with you in case it can help someone else too!)

• I have waterproof pillow protectors under my pillowcases. Note - don't use, if you can help it, the plastic kind that just crinkle and rattle about under your head - they're super annoying & sure don't help with sleeping, plus they make you feel like a kid who wets the bed, you know? Instead, find the kind that are towelling on the outside and coated in a PU waterproofer on the reverse of the fabric. They're much softer & thinner - though in all honesty they cost more & don't tend to last quite as long as the other types.
• I also have a waterproof mattress protector, quilted so it doesnt rustle. Expensive, but worth it to protect my much more expensive mattress!!
• I try to remember to keep spare pillowcases in the room so they can be quickly changed if I need. I can't always lift my pillows to do that though, so it depends on whether my carer is here.
• Ok, now this is gross, and totally embarrassing - but a quick fix I sometimes use when the pillowcases can't be changed, or when I know I'm only going to sweat more anyway so it's not worth changing them till after I 'wake up' - I dry them with a hairdryer and then try to go back to sleep. When you're bedbound and dependent to any extent on a carer, you don't always have the perfect option of re-making your bed or even changing your pillowcase! Unfortunately, we don't live in an ideal world. I also hate leaving tons of washing for my carer too, so I try not to have the sheets changed constantly.
• I believe you can actually buy sleepwear specially designed women going through the menopause who get night sweats, which helps wick the sweat away from you so you don't wake up cold - but I've never tried it as I have problems with wearing anything even vaguely heavy - causes too much pain. It's vest tops and shorts for me! Whatever you do though, don't wear silky type clothes if you're having night sweats because they won't absorb any moisture and you'll end up freezing!
• Always try to make sure you have water by the bed, and keep replacing your fluids. Easier said than done for a lot of us, I know, but important all the same.
• You can buy special cooling sheets now, made of Tencel fabric - I've never tried them though, too expensive. I always thought they'd be a really good idea though!
• You can, alternatively, buy a cooling insert for your pillow - the Chillow. Now these are amazing. They have a special gel in them that stays cool, which in turn helps you to cool down. You can even put them in the fridge before bed, if you like your pillow super cool. I find it helps reduce how much I sweat, and also just keeps my head a bit cooler when I am sweating. (It gets radiator hot!) Chillows are designed to stay cool for the first few hours of sleep, then slowly they get a little less cool - just as our bodies are designed to do. It doesn't quite work for me though because my sleeps are so much longer than for most people - so the coldness doesn't last quite long enough. However it helps to a larger extent, and it's well worth the money if you can afford one!! (It also helps when I have a migraine, by the way!)
• I always have a fan on in the bedroom to keep the air moving around the room. This won't work for everyone, probably depends on your specific reactions to room environment, but for me, I simply can't cope without one, even in the winter! Oddly, I sweat more in a cold room than a hot room - & it's even worse if the temperature is very changeable ... so I try to keep my best to keep the room a stable, warm temperature ... with the fan to cool me down. I suggest experimenting & seeing what works for you. :)
• I use a lot of talc for when I have milder sweats. It does nothing for the worse ones, of course.
• You should probably be careful how much caffeine you have, & spicy foods you eat; & how much alcohol you drink.
• I have heard that for some people, certain vitamins, such as vitamin D, can help reduce or even eliminate night sweats. I'm in a catch 22 here though, because I literally can't afford to buy vitamins every month ... and my doctor always seems reluctant to prescribe them as of course, it costs the NHS money.
• It's also worth checking your thyroid function. A lot of people with ME may have thyroid problems which can contribute to these symptoms.

Reader Question : Do you have any coping tactics which help with night sweats?

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! :)

Coping with Night Sweats in ME - the Practicalities, Difficulties, & Shame.

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An Ode To Insomnia

Why is it that when we most need to sleep, when not sleeping is going to make us sicker, that that's when Insomnia rears it's ugly head??!!??

I don't have anywhere near as much of a problem with Insomnia now as I did in the first few years after my relapse ... when I would rarely be able to sleep more than a few hours a night, and would regularly be awake for days at a time. But still, now, on the days when sleeping is most vital, it's like my brain has a hissy fit and refuses to play ball - just sits down in the middle of the court, folds it's arms, and sulks with a vengeance.



I'm trying hard to rest and recover from my visit to the dentist this week, my first outing in over 8 months - something I'll try to talk about over the next few days as I'm able - but my body's on high alert and my mind just won't stop buzzing - little wonder considering how much adrenaline seems to be rushing around my system, and how high my pulse is right now! The physical stress of leaving my bed, never mind the house, and undergoing painful dental work has left my body in a pretty bad way. My pain levels have been fairly stable for the last few months, but now they've suddenly kicked off again with a vengeance, and let me tell you, lying awake in mind-numbing pain is not my idea of a good time!! My M.E. is totally kicking my butt!!

All in all, I feel pretty frustrated right now, & I'm dreading trying to sleep today! I've set some essential oils burning to try to calm myself down physically before settling down to sleep (well, my carer has), hopefully that will help. And thank God for my sleeping tablets, Zolpidem, which not only make me sleepy but also go some way towards dulling the pain for a few hours so I can get to sleep initially, which is often my biggest issue.

I found this poem a while ago, by Liza Rosenberg and I find myself thinking of it now when I'm hit by a bout of insomnia - it always makes me smile because it's so me. :) I thought I'd share it with you guys too. Please do check out
her site, she has some really awesome poetry posted there. :)


Ode to Insomnia

Bleary-eyed and body weak
The lack of sleep begins to wreak
Havoc on my tired soul
Exhaustion starts to take its toll

I try to rid my mind of thought
But sadly it is all for naught
For slumber doesn’t want to come
Despite the brain and body numb

So I sit and try to write
Listening to sounds of night
Feeling just a little punchy
Damn it! Now I’ve got the munchies…


Posted With Permission. :)

Reader Questions : What do you guys do to beat Insomnia? How do you cope with the emotional side of not sleeping & the increased symptoms that causes?

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! :)

An Ode To Insomnia

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Heartbeats, Adrenaline, & Dentists - or more accurately, a general ramble about my week.

For the last 4 days or so, I've had one of those strong, heart-thumping-out-of-your-chest tachycardias pretty much constantly, along with a heightened stress reaction to things like sudden noises (bad enough normally but a bit insane right now), my muscles being constantly and painfully tensed, meaning I can't get comfortable. I'm definitely in 'fright' mode, my body ready to respond to some threat that isn't going to come. (Well, unless we count the possibility of a psychiatrist knocking on my door and sectioning me for 'believing' I have M.E. LOL)

I'm on antibiotics right now for a bad(ish) urinary tract infection (I seem to get them all the time) and I guess maybe either the physical stress of the infection, or the antibiotics themselves (or both) could be what's caused this. Whatever ... I just wish it would go away!

It's really exhausting me even beyond normal standards right now. My brain's scattered all over the place even more than my normal state of pretty constant brainfog, - I'm too tired to think, never mind write, or speak - thankfully with these very occasional moments of absolute clarity (which is normally rather hard for me to come by, lol) which I am using to my benefit, allowing me to stay at least a little connected online. So I thought I'd check in with you guys and let you know where I'm at. :)


For those of you who read my post a couple of weeks ago about dental treatments ... the domiciliary dentists who came to see me have arranged an appointment at the surgery to have my broken wisdom tooth removed, in a couple of weeks. They had to find a slot free for the first appointment of the day, so that I can be taken into the dentist pretty much as soon as I arrive. Being a day sleeper, this will be at the very end of my day - but it's a much better alternative than having to wait for an hour, sitting up, in a probably germ infested waiting room.

The only way I can think of to plan for this visit - my first trip out of this house in over 6 months, and only the second in more than a year - is to take painkillers, caffeine & glucose, and possibly half of one of my sleeping tablets (zolpidem) because oddly enough they make me more mobile than usual. (Weird, I know. I have no proof but believe this to be because zolpidem has a very specific affect on the brain - there's research going on using it to bring coma patients back to consciousness!) I honestly don't think this will even be possible without medicating myself first, sigh. Then I'll have to lie down in the back in of the car on the way there & back (which will inevitably cause car sickness and a lot of pain - not to mention a risk of death if we crash lol), with my pillows and body pillow to help support me, and a blanket so I don't get cold - and then get in and out of the surgery as quickly as humanly possible. I have no option but to do it, because if I don't get it sorted now, it will become infected and make a bad situation much, much worse. Any other ideas would be most welcome!!

I'm terrified of collapsing while I'm out. I'm terrified of the actual treatment too, because I have TMJ (jaw joint) issues, making it very painful to have my mouth open for long, and with it being a wisdom tooth it'll be difficult to get to as well. I'm scared because I plain old hate dentists - though I've been working on that fear and it's not so bad as it was. I'm even more scared that I'll crash badly afterwards and go into a worse relapse state, losing the already only tiny bit of independence I have, and the ability to be online. I know there are much worse things than being bedbound in the state I am in right now, because I've been there. And I know that I'm teetering on the edge here already and I don't want to fall over it again and end up back where I was a few years ago when I was regularly having paralysis symptoms, for example.

I'm going to have to rest well over the next couple of weeks, to give myself the best chance of that NOT happening! Rest - funny really, since I'm already bedbound, to talk of rest - to most people my life would seem a constant rest!! How little they know.

So now ... if my heart would please stop being silly and calm down, and if my adrenal glands would get that there's no danger and stop pumping that darned adrenaline out, so that I CAN rest and relax, I would really appreciate it! :p

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! :)

Heartbeats, Adrenaline, & Dentists - or more accurately, a general ramble about my week.

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