Am I Invisible???

What are you meant to do when you're bedbound and your doctor is ignoring your attempts to contact her?

6 weeks ago, my doctor called me with the results of some blood tests, and about some serious cardiac & gynaecology symptoms I've been having. It had been pretty hard to get in touch with her at the time. My surgery refuses to do home visits for anyone unless they're cancer patients, because they don't have the resources. It's a common phenomenon in some poor inner city areas in the UK especially for people with illnesses like myalgic encephalomyelitis ... but it makes life pretty difficult when you can't leave your house to go to the surgery, and even phonecalls with the doctor are difficult to get about M.E. related issues. Eventually I managed to get a phone consultation with her about a minor infection, (how ironic is that when I have so many more serious things happening??!!??) and I took the opportunity to bring her up to date with more of what was happening with my health, which had led to the blood tests, and her phonecall with the results.

She was apparently very concerned at my vitamin d levels. I'm severely deficient (< 5!) - which is bad as it's probably been going on for years (I've been housebound for 8 years now) and my bones are likely in a serious mess as long term vitamin d deficiency causes Osteomalacia, which is essentially adult rickets. It's also likely that the deficiency is adding to my levels of illness in other ways, such as increased fatigue, pain, and muscle weakness.

We also talked over some serious cardiac & gynae symptoms (See my last post about these issues for more details) I've been having for some time now. She said she was referring me to see the cardiologist & gynaecologist specialists. She said that she would get the paperwork out to me, which I need in order to actually book the appointments - you don't even go on the waiting list until you phone the appointments office with the referral details. She said she was also going to try to get me booked in for 24hour cardiac monitoring before my cardiology appointment so that I'd have that information to take with me.

Additionally, she said she wants to refer me to specialists for bone scans etc because of the vitamin d issue, but would wait on it till I've seen the cardiologist & gynaecologist, because they are 'urgent' referrals (her words!) and I will only be able to cope with so much at once, physically speaking - any appointments outside the house are really major for me. She said that she was going to work out the dosage of vit d i would need (Possibly will need injections) and would call me the next day.

Now, here's the rub. That was 6 weeks ago, as I said, and I've heard nothing from her since, (despite phonecalls from me and my carer to the surgery, and an email from me to her work email address) apart from an acknowledgement that she had received the email, and a promise to reply within 2 days. That was a week and a half ago now!!!

She didn't even send me out the paperwork for the referrals, (though she did put the referrals through) despite phonecalls asking the receptionists to look into it for me, meaning that that's 6 weeks these so called urgent referrals have been put off. I finally received the cardiac appointments paperwork this week - we think the practice nurse may have posted them out - so have been able to go onto waiting list for that apppintment. However, there's still no sign of the gynae paperwork so I can't even get onto the waiting list. As for vitamin d, absolutely nothing is happening, which, considering how freaking worried she was, seems pretty outrageous to me!!!


I really, really don't know what to do now! I feel like I should be very angry ... and I think I am, in some part of my mind ... but mostly I feel really really upset and am losing hope that anything can ever get better with this kind of situation. Hope that I had only just begun to gain back after so many years of being chucked around by the NHS, and losing trust in them to the point that I have rarely seen a doctor over the years I've been severely ill. I really thought that perhaps this doctor would be the one to care enough to give me the treatment any other person with any other illness would automatically get. I guess I was wrong.

Every time I think about all this, I'm tearing up (unusual for me!) and honestly, feeling quite scared to be so alone with such scary symptoms. The cardiac problem especially seems to be getting steadily worse. When I'm upright for a while, like when I have a shower (sitting in my shower chair) my feet are now going so grey/mottled/blue that it's kind of freaking me out - watching that getting worse week by week is the kind of visual aid I can really do without!!! It feels sort of claustrophobic - like I'm trapped in this crappy situation, because there's nothing I can do to make her do the things she promised to do. Nothing I can do to improve this situation. I don't have the energy to fight any harder. :(

I honestly feel that there is no way that this doctor (who's very nice, by the way) would ever treat someone with a different, more accepted illness this way, and it feels so completely unjust and unfair. But there are few options for someone like me in the area I live. It's really hard work to stop myself from falling into hopelessness! I want to be happy and I work to be happy - but this issue makes that fight much, much harder! I feel utterly invisible ... and I'm just so, so tired of having to fight for the simple right to be treated like everyone else.

photo by slurpiesandstraws ☮	via PhotoRee

..... Read the continuing story in this related post : Letter to my GP | The Thing With Feathers

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! :)

Am I Invisible???

Tweet

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!

photo by lovelypetal	via PhotoRee

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!!

photo by eflon	via PhotoRee

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!!

photo by i heart him	via PhotoRee

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

Tweet

An Ocean of Grief

I've had a few really difficult weeks in terms of increased symptoms, after over-extending myself in various ways, and have had no choice but to not be online much, & to rest as much as I can stand it. I haven't had any spare energy to give, so I've had to just stop, and deal with the emotional fallout of that - which has been quite extreme given the amount I am repressing already on any given day. I have so much grief and hurt hiding inside me - and the main way I keep it shoved down deep inside is by keeping my mind busy.

So unfortunately, the side effect, for me, of slowing down is that I have more time to think not to mention feel. There's nothing to fill the silence inside my mind. When I'm able to stay a little busier - be online, connect with people, write on my blog, do small jobs on the forum I work on, read books ... it gives me less time to really feel what I'm going through. Less time to focus on how difficult, uncertain, scary and intense it is to be so ill, dependant, and isolated. Less time to remember all the things I've lost, and the things I may never have... To feel guilty about the burden I place on everyone around me... And most of all to remember that with each passing year I am missing the chance of finding a special someone to share my life with, who will love me as me, and with whom I can bear a child. At 35, with an pre-existing infertility issue, the chances of me ever having a child of my own are probably now completely lost. When I can't keep my mind busy, those long hidden things tend to come flooding back in .... So needless to say, I'm really struggling right now.

Sometimes I think my life is rather like I'm constantly swimming in this huge ocean of emotion ... and on a good day, when I can stay busy, I manage to swim, and so stay afloat - but bad days feel like I've been pulled under by a rip tide, and bashed my head on a rock. I'm stunned, and these waves just keep hitting me & I'm powerless to do anything about it. Unable to keep my head above water. I know it's really bad when I don't even feel anger anymore, just a deep, dark sense of despair, fear, fatigue & hopelessness.


There's been so much grief in my life, and often that's all I can see ahead of me, too. I don't see that as depression, or even a sign that I'm giving up hope ... it's just that the reality of my situation is that there's not even a little bit of certainty in my life or my future - and there's an overwhelming likelihood that this state of loss and grief will continue indefinitely, until I've missed every major milestone in a 'normal' person's life, and lost most of the good things that I did have.

I don't plan on giving up the fight, but I feel that every year that goes by with me still so severely ill is another battle lost ... and takes me another step closer to losing the war. And maybe that's another reason for the strength of my feeling right now - it's my 35th birthday next month - another year gone by without me being able to leave my bed and live my life.

I try so hard to hang onto the good things, and not to give up hope - but it's the hardest battle I can imagine! Honestly, this life I'm living could barely be called a life, and it's really, really hard to keep fighting when everything seems to be against me, and when I'm just so darn tired of it all. I don't even have to simply fight my body, my illness ... I also have to fight just to be recognised as genuinely ill. To get the medical treatment I need. The acceptance, support and love I need. Nothing comes easily when you have M.E. I'm sicker & more disabled than the majority of people with (for example) MS, Cancer, Aids ... yet am treated like there's nothing really wrong with me physically. I just can't begin to describe how completely soul destroying that can be.

I am so alone medically - half of my symptoms haven't even been officially documented, never mind tested & diagnosed. I sometimes think ME is loneliness. I may as well be in a country with no medical care, because I receive barely any support or treatment. This situation doesn't exactly render my default setting 'hopeful', rather, that's something I have to fight for. Have to earn.


My conclusion? Hope is a choice not a feeling!!


My life ... I suppose all of our lives, are a complex twist of pain, joy, hope & grief all muddled into one. Some of us have more pain and loss than others - but the principle remains the same however much we hurt - we have to choose whether to go on and live through it, try to forge out some semblance of happiness - or give up and fall into our pain and stop seeing the joy. For most people, there's probably a close to even balance of good and bad. Sometimes, for some of us, our lives overbalance into the negatives and we then have to work even harder to see the positives - and to find enough of a reason to go on.

Some days I'm really struggling to find that reason. Much of the reason I do keep fighting is for the people I love - because I don't want to hurt them by giving up - but that isn't enough to make me happy, only enough to help me survive. I feel like I'm living in a state of emotional darkness. That's not to say that the light doesn't occasionally manage to flicker through. There are moments of love, of beauty, of memory - but those moments are all shadowed to some extent. I honestly can't remember the last time I felt pure, unfiltered happiness - and that in itself is a massive point of grief.


I feel like I should try to end this post on a positive note ... but honestly, I just don't think I have it in me right now. Life is tough sometimes, and this is one of those times.

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 Ocean of Grief

Tweet

Six Products I couldn't live without!

Hi!

I wanted to share with you guys the six products that have helped me cope with being ill, in pain, and bedbound the most recently - those which have made enough of a difference to my life that I would highly recommend them to other people in similar circumstances. It can be hard to find things that are actually worth the money you pay ... and there are SO many gimmicky products that tell you they'll somehow revolutionise your life, when all they really do is make you poorer. ;)


The Marpac SleepMate White Noise Machine

Bit of a bigger review here simply because I posted one on Amazon a while back so I can just copy/paste to save effort.

Oh my gosh, this is one of the best things I've ever owned!!! Some of my biggest problems right now are noise intolerance and insomnia. For years I've slept with a large fan on in the summer, and the white noise it makes lulls me to sleep, and it shuts out so much household noise that it helps me stay asleep. It also makes me more relaxed while I'm awake, and lessens the 'jump' effect when there's a sudden noise in the house. Of course in the winter the large fan isn't always an option, and I always struggle more with my sleep. (and miss it when I'm awake too!) This year my noise intolerance has been particularly bad, and so I started to search for an alternative to my fan.

After some research, I decided to try a white noise machine, and I got one this Christmas, part gift from my parents, part gift to myself. I had read that the machine sometimes takes a week or so to get used to, and also to find the settings that work best for each individual, and that was the case for me even though I'm so used to constant white noise. (There is quite a lot of difference in tone and volume on the different settings available.) I tried out different tones during waking hours for the first week, while I adjusted to it, but it soon faded into the background and I started using it at night after about 5 days.

It's a very simple design and I would imagine it could keep running for a long time without any problems, though of course I can't give you a personal account of that. No, it's not fancy - but to me that's a plus because to use internal fans rather than a recorded sound (which is what lots of other noise machines are) means that there is no 'loop' in the noise - it's a very even, consistent noise, much more so than an actual fan, actually.

I've had the unit on almost constantly for 3 and a half months now, and I absolutely love it! I'm honestly not sure I could live without one now!! It actually blocks out more noise than my large fan ever did. I don't find it irritating at all, which I have to admit I was initially concerned about.

I'd recommend this machine to anyone struggling with their sleep or with needing a quiet environment, and most definitely for anyone with any kind of noise intolerance! Honestly, I couldn't rate it higher than I do!!


Perskindol Active Gel

A fellow ME blogger, Living Life from a Bed, recommended this product to me, and I'm SO glad she did! I've used 4head for migraines for years - a cooling menthol based stick that you rub on your forehead which instantly cools the area and essentially blocks the pain receptors - but it hadn't really ever occurred to me to find a similar product for pain elsewhere in my body. Perskindol is pretty much exactly that. It's a gel containing various essential oils including menthol and wintergreen (it smells basically like root beer, lol)

I've pretty much instantly taken to this gel. It smells quite strong but not offensive like some of the products on the market like Deep Heat etc. (which are so strong they stink your room out for days, plus make your skin feel like it's burning - they're the reason I hadn't tried any of these sorts of products for my ME pain) Once you've applied the gel, it can take a few minutes to really kick in, but then the area gets cold and the pain is reduced. I've found it's particularly affective for my RSI and for my feet which have quite a bit of very painful oedema right now. I hate that it's going to cost me that bit of money each month, but I'm afraid it's just become an essential!!


The Book Seat

This product is so simple it's genius! I literally couldn't read books without it, because it's too painful, and my hands are too weak, to hold a book open. (Though I've only been able to cope with audiobooks recently because of neuro issues, I ultimately by far prefer reading the book myself and this is the only way I'm able to do so now.) It's perfect for using on a bed, too, because you can position it on any angle. It needs little explanation, really. Your book (it holds even a large hardback book) sits on it, the pages are propped open by a transparent plastic bar at the front of the 'seat' and it's full of polystyrene beads so it can be moulded into the perfect position. I LOVE my book seat! ;)

Wheat Bags
As they sound, these are bags filled with wheat, which can be heated in the microwave (or cooled in the freezer) and applied to areas of pain. They're much better than hot water bottles, both because they're much more convenient, and because they mould to your body. You can buy them in heaps of places nowadays - just search them on google. :) They come in all shapes and sizes, to best fit different areas of your body.


Cushtie Pillows

These are absolutely my most necessary pillows - I've had several of them on my bed for years now, and they're just outstanding for my needs. I have an astounding number of pillows on my bed. Body pillows supporting me right down my body, pillows for my head, pillows for my legs, and pillows supporting my arms. And without them I'm basically a gibbering wreck of pain.

Cushties are small pillows filled with tiny polystyrene beads, with a stretchy soft cover which allows them to be moulded to your body in a way that no other pillow can be. They have the perfect amount of beads in them, unlike every other similar pillow I've ever tried, which were all over-stuffed and so nowhere near as comfortable. They're so soft and just, well, perfect!! I use them to support my neck/head, and my arms, and often mould one into my back, too. I'm really touch-sensitive and have just found cushties to be the best, most gentle support for my body! I just counted and I'm a little embarrassed to say that I have 8 of them currently on my bed. Oops. :D


Magicool Spray

If you struggle with getting hot flushes, night sweats, or really, really overheated, magicool might just help you! It's a cooling spray, described by the company as 'your personal air conditioner in a can'. Again, this is something which the first time I tried it, I was convinced it could only be just a gimmick - but was quickly convinced otherwise! It doesn't need much explanation. You spray it either on your skin or in the air around you, and it provides an instant cooling affect which lasts quite some time. I have no idea how it works, I just know that it does. ;)

You can get a fragrance free version, so it's probably safe for the majority of ME/CFS patients, unless you have MCS or something similar.


I hope these recommendations might help you guys - I'd love to hear from you if you try any of these items, or already have, and what you think of them! :)

What other products have you found which help you deal with your illness and pain?

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! :)

Six Products I couldn't live without!

Tweet

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.

Tweet

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.

Tweet

Dental Emergencies! What do you do when you're bedbound???

I've been thinking a lot recently about how there are so many disadvantages to being confined to your bed with M.E. that healthy people would never even consider!

Right now, I have a bad toothache. One of my wisdom teeth broke badly, months ago. Now, if I was one of my healthy friends or family ... actually, even semi-healthy, I could just zip down to my dentists, and get it pulled tomorrow! No problems.

Not for me. For the last few months I've survived on a couple of visits from the domiciliary dental service, who have put in temporary fillings - there's little else they can do. The last one fell out right before Christmas ... and I've been so ill since then that I haven't even been able to deal with a quick home visit from the dentist. So, predictably, the tooth was eventually going to start causing some major pain. And it looks like now's the time it's going to start playing up.

What to do??? Obviously I'll have to get the dentist service to come see me ... but I KNOW this tooth needs more than just a temporary filling. In fact, I'm not sure if it's not broken so badly now that that might not even work temporarily. But, I have to try at least. It will make my symptoms flare up to have to deal with a) having people visit me here, and b) messing my sleep patterns around, because my body clock is reversed and I sleep in the day. But it's either that or this toothache is going to get worse and worse. Especially with it being a wisdom tooth.

If they can't do a filling, or if it doesn't work, I honestly don't know what I'm going to do. I won't, I suppose, have a choice but to find a way to drag myself to the surgery, deal with sitting upright, in a busy, noisy, bright, overwhelming, germ filled waiting room, (it's a dr's surgery too) in order to get it pulled. God only knows how I'd cope with that ... or what kind of relapse it might cause afterwards, not just from leaving the bed/house but also from the trauma of the treatment itself (especially as I have bad problems with my TMJ joint (my jaw) which makes dental treatment really painful)! I still haven't recovered from ONE family day at Christmas, 2 months ago, and I didn't even leave my bed for that.

So yea, there are so many things that healthy people wouldn't have to give a second thought to, that are major missions for people like me - especially with the post-exertional issues that come with M.E. - this just being one example! I wish more people understood what life is like for us.

Anyone have any experience with situations like this, or ideas on the best way to deal with it? Has anyone ever had a dental surgery 'rush' you through the people waiting so you don't have to sit in a waiting room for ages, or give you a room to rest while you wait, or something??

Twitter Responses From Pantoeffelchen, who send over a really good idea for if my surgery isn't able to rush me through waiting, I could perhaps lie in the backseat of a car and have them come get me when they're ready for me. Definitely could help at least, especially if I brought my body pillow etc in the car.

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! :)

Dental Emergencies! What do you do when you're bedbound???

Tweet

How should we deal with this latest psychiatrist & media attack on M.E. patients??

So, the new Pace trial results were released online in the Lancet tonight. Yet another UK trial carried out by psychiatrists, with a patient population made up of people with the umbrella diagnosis of 'CFS', and, I might add, not including any patients who are severely ill - which predictably concluded that Cognitive Behavioural Therapy & Graded Exercise Therapy are the best treatments for ME - and in fact can even result in a complete recovery!

The study was based on the premise that in ME, the persistance of symptoms is caused by 'wrong illness beliefs' (ie believing you're ill when you're not), causing a fear and avoidance of activity, resulting in a deconditoning of the body due to lack of activity. (A premise which is not only completely ignorant of reality, but also deeply insulting!) You may at this point wish to note expert Dr Paul Cheney's deep concerns about graded exercise therapy, and Professor Hoopers Response to the PACE trial.

Honestly, my first reaction to these results was along the lines of 'same old, same old'. I mean, it's basically the same stuff psychiatrists, the government, and the benefits system in the UK have been harping on about for years now. I can't say it doesn't affect me, but you try to grow immune, you know?

Then came the storm of media articles, links popping up everywhere on twitter, and boy did my temper become engaged!!! I swear, my blood pressure must have doubled within seconds - all I think rushing immediately to my head, and perhaps beginning to boil while it was at it. I was fuming!




According to the hair-raisingly insulting title of The Independent's article, we should all just get out and exercise, and we'll be fine. Oh, and our illness is marked by "poor memory and concentration, disturbed sleep, aches and pains and disabling fatigue" - Oh yes, that perfectly sums up this life-destroying illness, doesn't it!!

The BBC's article was little better. Here they summed it up as 'Brain and body training treats ME'. Here our symptoms are described as mere 'tiredness, poor concentration and memory, muscle and joint pain and disturbed sleep'. If only!!!

The New York Times, thankfully, had a slightly more cynical & realistic view of the trial. (though this will make little difference for us here in the UK, it is nice to see!) It was a fairly balanced article, clearly showing the short-comings of the trial.


....................

It took me quite some time to calm down after reading these articles. I don't often get quite so affected by these kinds of things, but for some reason it really caught me off guard tonight. I was actually on the verge of crying, I was so angry.

I think ... I think I'm just so tired of all this. The politics of this disease are as exhausting as the illness itself - and there's something really very wrong with that picture! We shouldn't have to fight for the right to be respected, to be valued as members of the community, and to have biomedical research funded into our illness.

What really upsets me about media like this is the influence it has on how the general public see M.E., including of course our friends and family. There's already enough of a problem with misconceptions and wrong & unfair judgements on us. It's heartbreaking to think of all the people out there who are so desperate for support and understanding from their loved ones, and instead receive impatience, lack of understanding, rejection, and even downright cruelty. I've been on the receiving end of that myself a hundred too many times.

So what to do now? Well, the only real option, given that I'm not well enough to do much to actively fight this situation, is to put my feelings away in a box and try to move on, move past, and not live in this bitterness. Try to breathe again. How else are we meant to be able to deal with this crap?

Warning : Compressed Anger!!!!

How are you guys feeling about this situation ... and how do you deal with those feelings in this seemingly never-ending bombardment of disappointment?

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! :)

How should we deal with this latest psychiatrist & media attack on M.E. patients??

Tweet

Welcome to my life!

Note, April 2011 This was the first blog I ever wrote here. It was rather clumsy and didn't really say everything I wanted to say, so I re-wrote it and put it up as a page on my blog instead, once I'd had some time to get used to things! You can see the revised version by clicking on the 'My ME Story' tab at the top of my blog. :) I'm taking comments here for the page, because comments are turned off on the pages themselves. Thanks for reading! I appreciate every single one of you! Susannah

Hi! Welcome to my sparkly new, admittedly slightly strangly named blog. :) (see sidebar for a brief explanation)

I've been putting off posting for days now. Partly because my brain fog's been so bad, but in truth, mostly because I've been terrified of posting. Blogging is scary, lol! I feel like I have a lot in my heart that I want to say ... but whether or not it will be interesting to anyone else, only time will tell!

So, I thought I'd start by just introducing myself, and telling you a bit about me.


15 years ago I was a relatively happy nursing student, working night and day to qualify. I had friends, a life, and a purpose. I was, arguably, a workaholic - definitely type A personality, lol. I was working 5 day a week shifts, running a Sunday School at my local church, involved in lots of other projects, plus of course doing my uni work. I didn't have a spare minute to myself most days.

I was at work one day, on an Ear, Nose & Throat ward in the children's hospital, when I very suddenly started feeling very, very ill. I was trying to just finish my shift so I could find my way home on the bus and collapse in bed, thinking that I must have a chest infection or something coming on. (Those are regular occurrences in my life due to having the wonderful combination of asthma, & a crappy immune system) I remember I felt so extremely exhausted that I could hardly hold my head up. I was bending over my paperwork at the nurses desk when a nurse standing behind me uttered a startled cry and started looking all worried. Turns out I had a gland literally the size of a golf ball on the side of my neck. Lovely.

I somehow managed to get home, and spent the next several months barely leaving the bed or sofa, and just about avoiding being hospitalised, with my housemates looking after me as well as they could around their own busy lives ... slowly getting more and more behind on my university course. It was glandular fever. And believe it or not, this was the second time I'd been hit by it in my life - first having had it when I was in my mid teens, directly after a bout of chicken pox. Again, I had had chicken pox before, as a baby. Now, you're not meant to be able to get glandular fever OR chicken pox more than once in your life. Wasn't I lucky!?!

Even when I wanted to push through my symptoms and go back to work, I couldn't, because being a nurse, I couldn't return to the wards until the glandular fever had run it's course. Still, I told myself, eventually it would be gone, and I could catch up at uni, and get on with my life. It could be worse.

And eventually, my blood test came back clear, and I immediately pushed myself back into my busy uni schedule again - this time working even harder, to catch up on all the work I'd missed. To be honest, it was an awful time. I'd force myself through my lectures, with a LOT of caffeine ... then in every break, small or long, I'd literally lie down in a corner of the common room, near my friends, and fall asleep! Looking back, it was just insane to have gone back to uni in that kind of state ... but I had no idea then that doing so could trigger a permanent condition. (I'd spent my whole life, pretty much, working hard despite numerous and consistent illnesses - this wasn't any different, right?) Well, despite the struggle, I DID manage to graduate, albeit several months after the rest of my class.


Fast forward through the next few years of working as a Neonatal nurse in a highly intense ICU environment; (at first full time, then dropping to part time as my health began to deterioate and I was unable to keep up the pace), getting diagnosed with post viral syndrome, then M.E., getting married - to a man I loved very much but who turned out to be abusive both emotionally and physically (but that's another story!); & finally leaving said man ... and I was living in a rented house with a good friend - feeling like I was finally free, and could live my life the way I wanted again ... when I was suddenly struck with a really serious kidney infection, which landed me in hospital for a week.


And that's when my life fell apart all over again.


The infection finally cleared up, but between that and the stress of leaving my husband, (within a judgemental church environment) my M.E. went into a major relapse. This was, I think, somewhere between 6-7 years ago, and I haven't been capable of working a day since. (Dates are fuzzy for me because my memory problems are so extreme!!)

Since that initial relapse, I've bounced between being housebound & bedbound, being cared for by the most amazing best friend you could ever hope for, and I've had to learn that there are some things in life that you can't just push through. (No matter how much your doctors and the benefits system might like you to, lol!!) At this time, I've been completely bedbound for a year, & my pain and fatigue are so far showing no signs of letting up, not to mention a massive & rather scary list of a zillion other symptoms - most of which go completely unchecked by a doctor, since I live in the inner city and our doctors surgerys have little money or resources, and home visits are almost an impossibility. (i've had a home visit a grand total of once in the entire time I've been housebound!) My condition waxes and wanes a lot, but in the last 6 years I don't remember a single day when it's been a simple task to just leave my bed and get to a bathroom, or make a cup of tea, or well - anything at all, really! Every piece of energy I use has to be paid back in increased symptoms at some point later - like my body is demanding taxes. And all this while the world goes on around me, my friends and family moving on with their lives, building families and careers ... and me feeling stuck in one place, with an illness that isn't understood, or even believed in by many medical practitioners, never mind by the public in general. I've had to find ways to hold onto hope during some very dark times. I suppose it's become kind of a mantra to always try to find, and hang onto, the good and beautiful and hopeful things in life.

And so, I'm writing to you from my bed, just thankful that I'm able to do so - for now, anyway! I hope that this blog will be a positive place to be, and that it will reach even just one person who thinks that M.E. isn't a 'real' illness, and change their mind about it.

Thanks for listening!
Susannah

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! :)

Welcome to my life!

Tweet