Month: May 2012

Danni

How I Cope With M.E.

Autism, College, Computers, Danni, Gaming, Important Stuff, Interface, M.E., Mental Health, Penguins!, Physical Disability, Real Life, World of Warcraft

For M.E. Awareness week I am blogging about living with M.E. On Monday I wrote about what M.E. is, and yesterday I wrote about how it affects me. Today I’m writing about how I cope with severe M.E.

Due to the severity of my M.E, I’m unable to do many of the normal everyday stuff that other people do. This doesn’t mean that I spend all my time moaning about stuff though (I do a bit of that when things are bad, but I try to limit it). I’m very lucky that I don’t have depression alongside my M.E, (in fact, I recovered from 12 years of severe depression a few months into getting M.E, which is hard to understand but I have my theories) so the motivation to do things is intact. It’s just my body doesn’t let me do them.

As I spend a lot of time lying in bed, I need something to do while there. The answer for me is the tablet computer I mentioned yesterday- my ASUS Eee Pad Transformer. Her name is Cameron 🙂 She runs Android Ice Cream Sandwich 4.0.4 with a custom rom (that bit’s just because I’m a geek) and she basically keeps me sane. On Cameron I’m able to use Twitter (I like the Plume app- I’ve made it all colourful), keep up with emails, read blog posts and websites, play Draw Something (and get complimented on my drawings as I’ve got a 10″ screen which makes it easier than on a small phone), communicate with other people either online or when I can’t speak or it’s too exhausting, and when I’m well enough I can watch videos or television shows, read books or listen to music on it 🙂 I’m also using it with the keyboard dock to type this blog post (the keyboard dock makes it like a netbook).

Twitter is an awesome source of support for me. As tweets are 140 characters or less, they’re short enough for my brain to process. I’ve met so many wonderful, supportive people on there, both with and without disabilities, and it’s so helpful to be able to talk to people who are going through similar things to me. I’m very fond of virtual hugs and squishes, especially as I’m often too ill for real life ones. The Spoonies* especially are amazing, as they’re all ill themselves yet try to help other people as much as they can. We celebrate each other’s acheievements, help each other with problems, and just chat and share things between us. I also get most of my news through there (often shared by someone I follow). Quite a lot of my day is spent on Twitter as it doesn’t make me more ill, and it’s a very postive thing for me.

I follow quite a lot of different blogs in my Google Reader, and try to read all the posts that are there. This doesn’t mean I necessarily understand them, and some of the longer ones can be quite hard (which I feel a bit bad about as I’m guilty of that myself) but it helps me keep up with things and follow what people are doing. Since reading is the easiest way for me to take in information, I read blogs in a similar way to how people listen to podcasts (which is very difficult for me- some people find it easier than reading but I’m not one of them) so it’s another good way for me to pass the time and feel like I’m doing something, even if I’m unable to comment very much at all. I also follow some I can haz cheezburger? and comic feeds that are normally good 🙂

My faith is very important to me, though it’s personal so I don’t talk about it all that much (it’s not that I’m embarrassed, it’s just something I don’t feel I need to share constantly). I’m a Christian (Anglican- mostly Anglo-Catholic though I’m very much for gay marriage, gay and female clergy at every level, and other “liberal” stuff) and knowing God is always there for me and Jesus knows what suffering is like is a constant comfort. I pray a lot, sometimes in words, most of the time without, and though I can’t make it to church I know He understands 🙂

I used to spend a lot of time on the AYME (Association of Young people with M.E) member forums, though now it’s difficult for me to get on there much. When I can though the support is awesome, especially from the other SAMs (severely affected members). I also receive emails and the magazine from them, and can contact them (or Johan can contact them for me) if I have any questions or I need help regarding my M.E. As most of the members are of normal education age it was especially helpful when I was attending college, as there were other people going through similar things. Although I don’t agree with their stance on some things (I’m not going to go into that here) the support I’ve had as a member, especially from the other members, is excellent.

I try to remain as positive as I can (this does not mean you should tell me or any other ill person to be positive- that just makes the person feel lousy). Everything I’m able to do is something to celebrate, even little things like being able to roll over and being able to eat solid food 🙂 I am so grateful for everything I can do as I’m aware it could be so much worse. I limit the amount of bad news I read- I don’t avoid it entirely but as I can’t process things properly or do anything about it there’s no point me getting upset. I like trying to be as supportive of my friends as they are as me- not sure I manage that but I do like giving out squishes 🙂 I hope they improve, especially those who are more ill than I am. I surround myself with things that make me happy- I have Penguin and Katie (my teddy) in my bed with me at all times (Penguin is normally in constant contact with me), Erica is close by, I have a penguin on my wall and a purple penguin canvas next to my bed. When we get the room decorated and the blind up it’ll be even nicer in here for me 🙂 I know and like who I am and although I hate my M.E, I don’t hate myself.

When I can do something, I take advantage of it (though I try not to overdo it as that leads to payback or relapse). Sitting at my computer and playing World of Warcraft (which I currently do about 2 or 3 times a week, though I’m trying to build that up) is a big thing for me, even if I’m not well enough to do progression raiding with my guild now (though when I’m having a good day I can sometimes do Looking For Raid as that’s easy). That’s the best distraction from the pain and how ill I am I’ve got, as I get into my character and what I’m doing so well. Sometimes we’re quite creative to let me do things- I originally discovered I could stay upright in my wheelchair to stay upright by tying a scarf around my chest, which meant that getting a torso harness allowed me to go out a few times. That was just amazing and the memories from then helped me stay positive during the relapse. My weekly wash is one of the best parts of the week, even though it is so exhausting and painful at the time and causes payback.

The main thing I do is listen to my body. I don’t concentrate so much on what or how many symptoms I have (though sometimes they’re pretty demanding for me to know they’re there ;), but more on how I’m feeling overall. I then judge if I feel up to doing something, and if I do I’ll do it. Sometimes I get this wrong and overdo it, but most of the time this works really well and it allowed me to build back up from the relapse in December, and it’s helping me recover from the relapse a few weeks ago. I don’t have structured rests breaks (trying to do that and track them was too exhausting), but most of the stuff I do is pretty low energy and I often just stare into space or just lie there with my eyes closed for 5-10 minutes, which seems to work just as well. Sometimes if I feel I need it I’ll either nap or lie with my eye mask on to rest completely. I sleep when I feel sleepy (which is slightly different to the exhaustion and fatigue I experience all the time) and do things when I feel able to do them. It means I’m not always awake at the same times each day, but trying to force a “normal” sleeping pattern just makes me worse.

On the more medical side, I take tramadol and ibuprofen for the pain, lansoprazole to protect my stomach from the ibuprofen (which also helps with my acid reflux and heartburn a bit), cyclizine to cope with nausea, Buccastem (buccal prochlorperazine) if I’m vomiting too much to take the cyclizine (which works better and for longer, but the Buccastem works long enough for me to take it) and I was meant to be taking vitamin D and calcium supplements but the form I was given (a powder to be mixed up as a drink) was intolerable so I need to ask the doctor for an alternative (when I was last tested for them my vitamin D levels were on the higher side of normal after intensive supplementation as I’d been severely deficient and my calcium levels were normal, so it’s not urgent but it’s to prevent any problems from occuring). These make life tolerable. Last year I was able to come off the psychiatric medication I’d been taking for severe depression (which had helped me a lot) without any relapse. That was a big achievement for me.

Every medical professional I’ve had dealings with since I’ve had M.E. has been very supportive. Some have been surprised at how severe my M.E. is (I then tell them that it can be a lot worse) but all have accepted it’s a physical illness and just want to help me be as well as possible and hopefully improve. This makes me exceptionally lucky, but being believed and knowing I have medical support there makes things so much easier to deal with. The main advice I’ve been given is to get lots of rest, and there has been no suggestion that I do exercise or get any counselling to think my way out of this, though I do see a psychologist and a physiotherapist (the CFS clinic people) to help with management. I did have to have depression ruled out as a cause but due to my history I understood why my consultant wanted to do that before confirming my diagnosis. My old GP recognised my M.E. and initially diagnosed me. My new GP hasn’t even met me yet but has already been very helpful with prescribing medication and contacting the CFS clinic to see how they can help more, and if I need one I can get a home visit (I don’t want to bother them if I don’t need to, and the things I need at the moment are minor so can either wait until I can get there or possibly be sorted through another appointment that Johan attends for me),

I get (or am in the process of getting) all the support I’m entitled to (at least as far as I know). My benefits are currently sorted, and although I’m yet to be transferred over to ESA I’m obviously ill enough and very easily meet the criteria to get into the support group, though I’m aware I may need to appeal for that. My main worry is the medical but I’m hoping my GP will support me for a home visit, and I already convinced one ATOS doctor for DLA. I’m also entitled to social care, around 15 hours a week, which should be in place again soon. That should help quite a bit. I also go into a care home three times a year for respite to give Johan a break, which helps him loads which in turn helps me. We’re also getting some people in (paid for from my DLA) to do some housework.

My friends have been amazing. Some of them don’t understand M.E. itself (I’m happy to answer any questions they have or direct them to information if they’re interested but don’t want to force it on people who may not want or may struggle to understand) but they’ve all been very supportive and stood by me when I got more ill. They understand that contact may be sporadic as chatting to people is exhausting but when I’m able to they’re just the same as ever 🙂 I’m unable to use Facebook much at the moment as it’s too confusing and exhausting so I don’t keep in touch as often as I like, but I like to see what they’re up to when I can and celebrate with them. I’ve already mentioned the Spoonies and my other friends on Twitter who are a great source of support, and as well as Twitter and Facebook I’ve also made new friends through AYME.

South Tyneside College helping me as much as they did and trying everything they could to help me achieve what I did and to try and help me continue was brilliant. I am sad that I just got too ill to finish my A Level, but I did get my A in AS Computing and I learnt lots at Interface (the autism unit) as well. A special mention goes to Simin, my Computing lecturer, the staff and students at Interface, and especially to Louise, who was my key worker/personal tutor the entire time I was there, and did everything she could to help me, not only with my autism but also with my depression and anxiety and then with my M.E. I don’t think I’d be coping anywhere near as well as I am without what I learnt at Interface and without the support that Louise gave me.

The main person who helps me cope with everything though is Johan. He is my husband and my main carer, and for both he’s been as supportive as he could be. He does everything for me that I can’t do, and helps me with everything that I need help with, and he doesn’t complain and acts like it’s no big deal (except when I’ve woken him up, but that’s understandable :P). He struggles with some bits (the carer and cleaners will help a lot with that) and needs a break when he can get one, but he rarely complains and just get on with it. Without him, I’d be in a care home (which would be worse for me, especially long term). I love him so much and he helps me deal with life so well, and I’m so much happier being with him. I know he feels the same 🙂 He often doesn’t realise just how much he does for me, but he’s giving me the best life I can possibly have with this illness and I’m extremely grateful for that. He is awesome 🙂

I was hoping initially that this post would be shorter than yesterday’s, but it’s turned out longer. I think I like that my coping post is longer than the post talking about how I’m suffering 🙂

*For the Spoon Theory, see butyoudontlooksick.com. It’s a very good, simple way to describe living with a chronic illness, especially one that can fluctuate like M.E or Lupus (which the author has) does. Some of us who use it call ourselves Spoonies.

Danni

How M.E. Affects Me

Danni, Important Stuff, M.E., Physical Disability, Real Life

Yesterday I blogged about what M.E is. The post was a lot more popular than I was expecting, so thank you 🙂 Today I’m blogging about how it affects me.

I have quite severe M.E. I don’t think of it as severe, but when I look at the different scales and such that’s where I’m normally placed. I am mostly bedbound, and for now completely housebound. I’ve been unable to walk at all since January 2011, so have to use a wheelchair when I do get out of bed. I used to be able to crawl but I don’t have the strength in my arms to do that any more. I am completely reliant on other people (normally Johan) to look after me because I’m unable to do it myself. If Johan goes out of action for whatever reason, I’ll be placed in a care home.

I have a lot of symptoms, most of which I listed in yesterday’s blog post. The biggest ones for me are muscle weakness, muscle spasms and pain. The muscle weakness means I am very weak- I struggle to hold normal cutlery as they’re too heavy and repetitive actions such as feeding myself are very painful and eventually impossible. I have muscle spasms in lots of different muscles. Some are annoying, some are very painful (especially the ones in my back or chest for some reason), some are very irritating (my bladder spasms mean I can constantly feel like I need the toilet when I don’t, and sometimes make me incontinent), but the worst ones are the ones in my hands and arms. If I try to hold and use cutlery or a pen, within a few seconds the muscles spasm, which is very painful and often means I drop the item. This means my hands are basically useless for anything that involves holding stuff for more than a few seconds. Luckily typing doesn’t involve holding anything and although it’s painful it’s less so than most other things so I continue to do so. If I can’t type normally then I can use my finger to swipe along the on screen keyboard on my tablet or phone to input text, which is slower but requires even less energy (and can be easily done when lying on my side).

As my hands are mostly useless, I require help with most self care tasks. This means things like washing, dressing and eating all require help from someone else. If my hands are being particularly bad then I’ll need someone else to place my medication in my mouth for me as because I can’t hold it or get my it to my mouth myself. I drink using a Hydrant which has a tube I put in my mouth, which I can manage independently nearly always. Holding things between my thumb and index and middle finger doesn’t trigger the muscle spasms so long as the item isn’t heavy and I do it right, so I try to eat with my fingers when I can (though the repetitive motions means sometimes I get very tired before I’ve finished and will require someone else to help me finish). I try to be as independent as I can as I hate accepting help, but I’ve learnt if I push too far when I’m not well enough I just get worse in the long run, losing what little I can do.

I am mostly bedbound. I have to spend the majority of the day lying down as being propped or sat up too long makes me even more exhausted and ill. During a relapse I am completely bedbound and unable to sit up at all, but at the moment I’m trying to build back up the amount of time I spend sitting. When I can sit up I like to go on my computer to play World of Warcraft, which also works as a distraction from how ill I feel and the pain I’m in. Luckily my computer chair reclines so I can sit in it for a while. I also use the commode by my bed independently most of the time, which I am grateful for (as our toilet is 110cm away from the cistern I cannot use it at the moment, but that will be fixed in a few weeks). Sometimes I’m able to stand to transfer, sometimes I’m not- and often I don’t find that out until I’ve fallen.

When in bed I spend most of my time on Twitter, checking emails or reading blogs. I also like to play Draw Something. For this I use my ASUS Eee Pad Transformer, which is a tablet with a keyboard dock. Most of the time I use it without the dock, but when I’m typing long blog posts such as this one it is quicker to use it. My tablet means that I can communicate with my friends easily, and is a good distraction most of the time. I am very lucky to have it (I needed a loan to buy it, but I have no regrets).

The pain is constant and severe, in most of my muscles and joints. I also have a sore throat, a headache and abdominal pain all the time. Luckily tramadol (a synthetic opiod painkiller) takes the edge off it when it’s my normal levels of pain, which means I’m able to do what I’m able to do. I also take ibuprofen which helps a bit with the headache and sore throat, but not massively and as I have to eat first it doesn’t get taken as much as the tramadol. Without the painkillers the pain is unbearable.

When I was able to go out (before the recent relapse) I used a harness to hold me in my wheelchair, as my back isn’t strong enough to hold me in a sitting position myself, and if I tried it would make me very ill. The last time I went out I wasn’t well enough to hold my head up, which was very uncomfortable. I am hoping to get a more supportive wheelchair from the NHS, possibly a powerchair, which would increase my independence a lot.

Fatigue is a big issue, though not as big as some of the others. At the moment I am sleeping lots- more than 12 hours at a time is usual, and often napping during the day as well (for example, last night I slept for 13 hours before pain woke me up, and since then I’ve had one nap, and will probably have another before sleeping for the night tonight). Sleep doesn’t make me feel any better, but I feel worse without it. Sometimes my pain levels are too high even with painkillers to let me sleep so I’m awake all night, often dropping off with exhaustion the next day. The fatigue itself feels ill.

I’m constantly nauseous. Most of the time I manage this by sucking on mints, but when it’s really bad or I’m vomiting I take cyclizine to control it. It works, but makes me even more exhausted and often puts me to sleep, so I avoid it when possible.

I have irritable bowel type symptoms, often going from constipation to diarrhoea and back again, along with abdominal pain and often not wanting to eat (which nausea doesn’t help). Because of this I was losing weight very quickly, but I think it’s slowed down a bit now so I’m trying hard to keep my weight at a healthy level (before I had M.E. I’d been obese due to psychiatric medication side effects). Sometimes I can only manage food that is soft or easy to chew, and at times Johan has to feed me as I’m too exhausted or my hands are being too silly.

Due to how ill I am, I only have a proper body wash about once a week, sometimes less. As this is exhausting, I need to rest a lot afterwards, but it does make me feel more human. Changing nightclothes happens about twice a week, and sometimes I can use babywipes to try and keep the smelliest areas clean.

I’m very sensitive to touch, sound, smell and light. I was already sensitive due to being autistic but the M.E. makes it worse. This means I have to be careful what toiletries I use (I’ve found ones that smell like food are very agreeable), I cannot have as many cuddles as I want, I can’t wear all my clothes (jeans are definitely out), I often need sunglasses if it’s too bright, and some noises such as the doorbell, the fire alarm or anything too loud makes me feel horrendous, so I have ear plugs and ear defenders (sometimes worn together). Johan is not allowed to use his favourite keyboard for his computer because it is too loud.

I also lose the ability to speak randomly. Some of that is because of autism, but it happens a lot more since my M.E became severe. I have brain fog (memory problems, concentration issues, word finding problems, feeling like my brain just doesn’t work right). If there’s any mistakes in my blog posts, brain fog is probably to blame.

If I do more than my body is capable of, I get extra symptoms. I start vomiting, I get temporary paralysis in my limbs (and sometimes my entire body), and my body shakes and jerks, which can be violent enough to throw me off the bed or out of my wheelchair (with the seatbelt on). I also get an increase in pain and other symptoms. Those are immediate. It also means I become worse overall.

The effect my M.E. has had on my life is profound. I had to give up college completely as I was just too ill to get there and too ill to do the work. I missed my best friend Colin’s wedding as I was too ill to go. Holding a conversation makes me very ill so I have to limit that and means I often can’t have visitors. I can watch some television on good days, but I’ve had to give up on some of my favourite television shows (House, NCIS, Glee, The Big Bang Theory) as I’m unable to follow them anymore. I can play some World of Warcraft when able to sit at my computer, but I’m too ill to raid with my guild and it takes me a long time to do even the simplest task in the game. I used to love reading books, but I no longer have the concentration to do so (that is something I never thought I’d give up). Being reliant on other people for almost everything is pretty depressing. When Johan needs a break, I go into a care home (which normally makes me worse, as they’re noisy and I have to explain things over and over again, when Johan is pretty good at guessing and predicting what I need).

I am very grateful for what I can do. My friends on Twitter keep me sane, and my other friends have been very understanding. Johan is amazing, and does everything he can to make me feel better. I live in an area with decent help for people with M.E. (the CFS clinic team visit me at home and I have a very good consultant who specialises in M.E) and nearly everyone I know believes in M.E, accepts how ill I am and if they can try to make it better for me (one person has decided I’m just attention seeking, which is very hurtful because they have had M.E. themselves, but that is due to their mental health problems as no-one is allowed to be more ill than they are). The staff at South Tyneside College (especially at Interface, my Computing lecturer Simin and my personal tutor Louise) did everything they could to make it accessible to me, which meant I was able to get an A in AS Computing despite being pretty ill at the time, and if I hadn’t have continued to decline I would still be there.

My M.E. reached its worst in December 2011 when I relapsed and became exceptionally ill (very severe M.E- at one point I was unable to eat or drink at all because I was too weak, nor was I able to able move or communicate at all, and the pain was like nothing I’ve experienced before). Since then it has slowly been improving, though I relapsed again a few weeks ago when I caught a cold (though not as badly as in December). I’m hopeful that by continuing to listen to my body, and trying not to do too much I’ll be able to keep improving and will be able to do more for myself and start going out again (although that normally occurs in the wrong order- I’m able to go out again before I can do more for myself :P).

The CFS clinic normally do Graded Activity Therapy (where you find your baseline, don’t do more than that for a bit, then very slowly increase the amount of activity you do) but as I’ve been too ill to do it (just monitoring my activity was making me more ill) they are just supporting me with my own method of listening to my body, suggesting a few things to try and help, and are available if I have any questions or need to see them. They’re going to see me at home every 6-8 weeks while I’m too ill to go to the clinic they hold in Gateshead (they’re based in Sunderland). I was seeing my consultant every 3 months, but haven’t been since last year due to how ill I’ve been, but I can contact him if I need to. My old GP was brilliant, and the new surgery seems just as good, as although I’ve yet to meet a doctor there they’re quite happy to prescribe me my medication and are contacting the CFS clinic and my consultant to see how they can help me further.

The main thing though is I’m happy. Yes, I have a sucky illness and spend most of my time in bed, but I have my friends, I have Johan, I have my penguins, and I’m well supported so I’m happy.

Danni

What Is M.E?

Important Stuff, M.E., Physical Disability

As it’s M.E. Awareness Week, I want to do some blog posts on M.E. This is the first post.

What is M.E?

M.E. stands for Myalgic Encephalomyelitis. It is also called Myalgic Encephalopathy, Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), and probably some other names that I can’t remember. There is a lot of debate and argument about whether these are all the same thing, what is the correct name, what is most accurate, but I’m not going to go into that here as it just confuses me. My actual diagnosis is Myalgic Encephalomyelitis, but as it’s often called CFS as well in the UK I sometimes refer to it as ME/CFS to be inclusive.

M.E. is a neurological illness that affects many systems in the body. Because of this, it causes lots of different symptoms that affect different sufferers in different ways. The main symptom that has to be present though is post exertional malaise- feeling severely ill and fatigued after mental or physical activity. This can take a day or two to appear, which means it may be missed initially. I call this payback. Because of this, trying to push through the illness and doing too much will actually make things worse (which is why Graded Exercise Therapy (GET) and some types of Cognitive Behavioural Therapy (CBT) can be so dangerous as they encourage this).

Other major symptoms include: muscle weakness; widespread pain in muscles and joints; fatigue (which is more than just tiredness) that doesn’t improve with rest; cognitive symptoms such as poor short term memory, poor concentration, finding it hard to find the correct word- sometimes called brain fog; sleep disturbance (either too much sleep (hypersomnia), too little sleep or difficulty getting to sleep (insomnia), or both); and flu-like malaise (feeling terrible – like you have the flu constantly). There are loads of other symptoms as well, such as headaches, sore throat, poor temperature control (so you’re either too hot or too cold), clumsiness, muscle spasms, temporary paralysis, dizziness, heart palpitations, chest pain, fainting, irritable bowel symptoms, hypersensitivity to noise, smells, light and touch, and mood swings. There are others that I’ve forgotten but this is an idea of them. I’ve experienced all these symptoms plus some others (becoming even more sensitive to medication, alcohol intolerance, enlarged glands, poor circulation, nausea and vomiting, altered consciousness). I’ve probably forgotten some that I’ve experienced (a poor memory is one of the symptoms) and other sufferers will have experienced some I haven’t.

Basically, having M.E. makes you feel like you have constant flu, with a hangover, having just run a marathon. All the time. It lasts at least a few months (in most cases it can’t be diagnosed until you’ve had symptoms for at least 3-6 months) and can last years or decades.

There is currently no cure for M.E, nor is it understood exactly how it develops. Many sufferers get it after a viral infection that just doesn’t go away, such as flu (as in my case) or glandular fever. For other sufferers there may be other triggers such as being vaccinated. For some sufferers it comes suddenly out of nowhere, and for others they slowly become more and more ill. There is a lot of overlap with the symptoms of M.E. and a lot of other conditions, so to be diagnosed you have to rule out all the other conditions first as there is no simple diagnostic test. This can take a while and can lead to people overdoing it during the early stages, which makes them more ill than they probably would have been had they been diagnosed earlier. It can affect any age, gender or social group.

M.E. varies in severity, from mild to very severe. Someone with mild M.E. will probably be able to attend school or work full or part time, but will have to be careful not to overdo things and to get enough rest. Those with moderate M.E. will find school or work difficult (or be unable to attend at all), will need to rest more, and find walking long distances a challenge. Those with severe M.E. are mostly or completely housebound, often need a wheelchair to go more than a very short distance (or as in my case, be unable to walk at all), and need to severely limit any mental or physical activity otherwise they will become more ill. Those with very severe M.E. are completely or almost completely bedbound, in constant severe pain, often unable to do the smallest self care task, may need tube feeding, be unable to roll over in bed, may be incontinent or need to use a bed pan (as even transferring to a commode can be too much), need to lie in complete silence and darkness, and cannot be touched or even have another person close to them . It is basically a living hell.

A lot of sufferers with M.E. have both good days and bad days. These are both relative- someone with mild M.E. having a bad day may be able to do the same things that someone with moderate M.E. can do on a good day (such as read a book). The severity of physical and cognitive symptoms can also be at different levels, so someone may be completely bedbound but might be able to read books and watch television most of the day, but someone else may be able to walk around the local area but unable to hold a conversation for more than a few minutes. As there is no cure most treatments are based on managing symptoms. Medications to help with pain, nausea and other symptoms may be prescribed, and for a lot of sufferers pacing or activity management (where the sufferer will limit the amount of each activity to what they can safely do each day) are helpful. Some people find complimentary therapies useful. As mentioned earlier, doing more than your body can cope with will often cause more severe symptoms and can lead to people becoming much more ill, so some therapies such as GET and CBT can be dangerous to those with M.E. (This is where the confusion between M.E. and CFS comes in, as GET and CBT can be helpful for some people diagnosed with CFS, but most of those probably do not have M.E.) Those of us who tried to ignore M.E. and push through it eventually learn that it doesn’t work, though unfortunately often not until they have gotten worse.

Some people with M.E. recover completely. Others will improve with good pacing and activity management, but may have periods of time where they relapse (often after an infection or similar). Some sufferers will stay at the same level for years on end. Some will continue to decline no matter what they do. There doesn’t seem to be any way to tell which someone will be other than to wait and try and manage the illness as well as possible. As with lots of other illnesses there are some unproven therapies that apparently cure M.E, but most of them cost a lot of money and although they may help some people , there’s no guarantee.

M.E. is not a mental illness or psychological, although as with every chronic illness there is a psychological component and it is unfortunately common for sufferers to develop depression. This means it cannot be cured with a talking therapy such as CBT, although CBT may be useful for learning to manage the emotional effects of the illness. Unfortunately most of the funding for M.E. (often deliberately called CFS) has been used for research into psychological treatments, though hopefully this will change soon. There are also a lot of people (including some doctors) who do not believe M.E. exists, despite it being acknowledged by the World Health Organisation as a neurological illness for decades. This is starting to improve, but it’s not great yet. This means a lot of sufferers have been and still are treated badly by professionals.

Death by M.E. is rare, but does happen. It is mostly in sufferers with very severe M.E, but there have been cases of those with less severe M.E. dying due to the wrong treatment, being told to exercise beyond what their body can cope with. Death is often by cardiac arrest but there can be other causes as well. Autopsies on patients who have died from or with M.E. have shown abnormalities in the brain and spinal cord. Suicide is also too common, as the illness becomes too much for some sufferers to cope with for any longer.

This has ended up much longer than I was expecting. There may be some inaccuracies in this- if so, please point them out and I’ll correct them. This is just my understanding of M.E, so for further reading see the ME Association.

Danni

Sleepy Danni

Computers, Danni, M.E., Physical Disability, Real Life, World of Warcraft

I am still sleeping lots. Johan is taking advantage of this to go out in the afternoons when I am sleeping. He went to see The Avengers which he says is very good. I would like to go see it myself but that is not going to be possible unless I improve lots 🙁

I have managed a bit more computer time where I played World of Warcraft, but both times I have overdone it and had to lie down very quickly. This morning I had a bit of a moan about not being able to do what I want to do because I’m too ill, and Johan was very understanding. I also felt very guilty as I know that there are people who are doing loads worse than I am but Johan told me that was silly and that no-one should have to deal with M.E at any level. He is right.

In World of Warcraft Danni got a Darkmoon Cub this morning so that is good. I am trying to get 150 pets on her before Pandaland comes out, and I currently have 131 I think. If I get close to the expansion and I’m not fully there I will buy some on the auction house (I already have most of the cheap ones) and there are also some real life money ones that I can get as well, and I think Johan was wanting to get me one as a present. There are some Argent Tournament ones I still need to get and some Horde ones that I could maybe get using Catalia and Johan’s account. I shall look into it and see what I can do.

M.E awareness week starts tomorrow so I’m hoping to do some blog posts for that. I’m not sure exactly what yet but I will have something for M.E awareness day on the 12th. I was hoping to blog everyday during the week but that may not happen if I sleep too much or am too brain foggy. Doing these types of blog posts doesn’t take much mental energy compared to writing about important things where I have to make sure I get facts right and stuff.

My trousers were not delivered on Thursday. This made me angry and upset as they didn’t even try to deliver them (they claimed to have left a card but none could be found, and our doorbell is very loud and wakes me up so I know they never rang it). I sent the delivery company an email saying this to them and they delivered them on Saturday instead. They are very nice though a little bit short when sitting down. That is okay though as I’ll just wear some nice socks with them 🙂 We have worked out to get the proper length trousers for me sitting down I need 40″ inside leg which is very long. I may get one nice pair tailor made at some point when my weight has stabilised a bit more so I have some proper smart trousers I can wear. Until then though my new purple ones are awesome and not scratchy 🙂

I want a television in my bedroom. Currently am not well enough to lie on the sofa (tried- it made things worse) but I can manage some television watching so when I can I’m watching some on my laptop, but as my overbed table is still not here (our old next door neighbours have kept hold of it and other stuff for us- we’re trying to organise getting them here) it is a bit awkward on the bed as it is too heavy for me to have on me for more than a very short period of time. Of course a television for my bedroom is quite low priority but it would be nice to have. I already have a unit that it will go on and know where to put it. Johan is also agreeing that I should have a television in my bedroom since I spend so much time in here. What I like to do is have the television on with something that’s not too difficult to cope with, like reality shows (though not singing ones) and then be on twitter or something like that on my tablet as well as I cannot concentrate that well. I also want to watch some films again at some point- the X Men films, try the Star Wars films to see if I like them this time, I want to see Happy Feet 2 and the Hunger Games once it is out on DVD since I won’t get to see it at the cinema.

I am in a lot of pain despite taking two tramadol (I did manage a short time with just one but then I overdid it on the computer- silly Danni) so I think I’m going to try and nap as I am also very tired. I just hope the nightmares aren’t as bad as this mornings.

Danni

1 Penguin, 2 Penguins, 3 Penguins, 4, Purple Penguins, Sparkly Penguins, Flappy Penguins, More.

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life, World of Warcraft

Title has nothing to do with anything other than my love for penguins.

My sleep is still all over the place, but I’m mostly in hypersomnia mode. Having long naps on top of long sleeps. This is good as it is what my body needs to do to get over the relapse- every sleep is another step towards being just that bit better.

I am frustrated as pain levels are still higher than normal so I’m still taking double tramadol. The double tramadol is working fine so I should be happy about that, but it’s just a reminder that I’m still doing worse than I was a few weeks ago. Also when I take two tramadol I feel all woozy and dopey and sleepy, which doesn’t happen when I only have one, so there is that to think about as well. My current pain levels though require it.

Johan is regularly brushing my hair for me. This is nice and good- something simple that makes my life more pleasant and also lets me be close to him. It’s also letting me practice sitting up unsupported- my back muscles are very weak so sitting on the bed with Johan behind me is a safe way for me to do so without worrying I’m going to collapse and hurt myself. Luckily I’ve not even come close yet 🙂

Yesterday I managed my computer for a bit (probably too long) and went into World of Warcraft and did all the orphan quests on Danni. I now have all the pets (including the new ones from last year) and some pet biscuits from the Northrend one 🙂 If I get the chance I’d like to do them on Tiarna as well (which will be quicker as she’s a Mage) but it’s not essential. I also did our monthly budget for May so I know where we stand money-wise. Things are a little tighter than I’d like this month (a few one-off things that are coming out) but we still have enough slack in the budget for anything I’ve forgotten or any emergencies and stuff- which is good as I have a feeling the World of Warcraft subscriptions may be coming out. I will have to check now 😛

Just checked my account- mine is coming out 22nd May and I think Johan’s is only a couple of weeks after, so I will need to add them to the budget. Not a problem though as I can afford them, but I won’t be buying the Collector’s Edition of Diablo 3. That is a shame, but I’m getting it for free with the WoW Annual Pass so it will only be the extras I’ll miss out on (I can technically still afford it but I’d rather keep the money for emergencies).

Also yesterday I bought a new pair of trousers. Since I lost loads of weight the only trousers I’ve been wearing are leggings (and a pair of too-short tracksuit bottoms inside), and the ones in my size that I’d bought by mistake ages ago are too scratchy for me to wear now (touch sensitivity is worse with the M.E so I can’t tolerate many textures, including jeans). The new trousers are a linen/cotton blend, which I normally tolerate rather well, and are purple 😀 They’re in the long size which is important as I have silly long legs (36″ inside leg when standing) and trousers appear even shorter when sitting down. I may show some sock but that’s okay as I have some really cool ones- rainbow ones or purple ones or penguin ones 😀 It will be nice to wear a pair of trousers again, as although I love my leggings and skirts sometimes I want to wear something different.

Apart from that I’ve mostly just been on the internet. A little bit of Twitter, catching up on blog posts in my reader, and in a bit I’m going to read more of the Blogging Against Disablism Day posts. I’ve also had lots of cuddles and handholds with Johan (I can cuddle a bit again! Yay!) which is really nice.

As I spend so much time lying down, I do a lot of thinking. Some of this isn’t important, some of it is stuff like ideas for future blog posts (I have lots of ideas, just not the spoons to write them yet as they need a bit of research), and some of it is reflecting on things I read. For Blogging Against Disablism Day Ballastexistenz wrote two blog posts about caregiver abuse, which made me think a lot. I’ve been lucky to only be on the receiving end of the milder types of abuse (mostly neglect and refusal to take my wants and needs into consideration) though obviously that’s bad enough. The main thing I’ve been thinking about though was about the power imbalance between the carer and the person being cared for.

What is interesting is that I don’t feel there’s much of a imbalance in power between me and Johan. Yes, he’s physically a lot more capable than me and if he wanted he could use that against me, but when it comes to everyday life I feel equal to him. Some of this is because I do as much as I can- I manage most of the finances (Johan discusses them with me, and we come to decisions together most of the time, but the money goes into my account and I sort out where it’s going each month), I normally do most of the shopping order, and I keep track of what needs to be done and when. The other reason is that I know that Johan won’t ever deliberately harm me (I know he’s capable of it, but I also know he’d never forgive himself if he were too- he’s terrified of hurting me and I have to reassure him he won’t a lot of the time) so I feel safe with him. This means that it’s easier to accept him doing things for me, including very personal tasks involving washing and stuff. He always takes what I want into consideration, and I also care for him while he cares for me, in that I help him with the things he struggles with and try and help him with his mental health. I’d love to be able to do more, but with my M.E this bad that’s not possible at the moment. We also both spend about half the day telling and showing each other how much we love each other, which is always a plus 🙂

I think that’s one of the advantages of both of us being autistic. We’re very open and honest with each other, and we’ll talk about things (even if Johan does have to remind me not to talk too long as it makes me ill). If anything were to bother me with how he’s looking after me (or anything else, for that matter) I can and do talk to him about it, and if he’s able to change things he will. It’s the same for him- he’ll tell me if I’m doing something that bothers him, and if I can I’ll try and change it so it doesn’t anymore 🙂 I also have friends I can talk to if I ever want to talk to someone else about things, and I’m trying to encourage Johan to find his own support to help him cope with things (probably with the Carer’s Association, as it’s close by now). We both acknowledge that we need time alone sometimes, and even if it can’t happen physically then we can manage it by being in separate rooms and doing different things. As Johan respects my needs, I try to respect his as well. It’s also why respite and breaks are so important- it gives Johan a chance to charge his batteries, and it can help me as well.

I want to go to Edinburgh on holiday this year. Johan is also happy with this idea, so long as I’m well enough (I’m not currently, but I’m hopeful I will be in a few months). It’s harder to do a cheap break away now that I can’t walk at all so everything needs to be wheelchair accessible and things, but I’m very good at finding cheap train fares and cheap places to stay (I normally find Johan’s, and my siblings tend to come to me as well) so I’m sure we can manage it even on a tight budget. The main reason I want to go to Edinburgh is the penguins- there are so many at the zoo and it’s perfect for Danni’s. I also want Johan to do something he enjoys while we are there- not sure exactly what but I’m sure he’ll be able to find something (there’s a really cool museum we went to last time that may be good to go to again if I’m well enough). If I’m not well enough for it this year then there’s always next year.

The other places I want to go are London to the Mad Up in June (although that’s not looking very likely at this stage for me, Johan might be able to make it again though) and Leeds to see Johan’s family. I’m sure someone will look at this and think that we get far too much in disability benefits, yet most of it is because of money management and the fact we live very cheaply. Neither of us drink most than very occasionally, neither of us smoke, when I am well enough to go out we tend to go to rather cheap places and the only nights out Johan does are Barcraft, which since he doesn’t drink much works out very cheaply. I’ve said before that I feel rich on the amount of money we get in, though when compared to what we’d get if both of us were working it’s not very much at all.

Of course being stuck in bed most of the time means that now I have most of the equipment and things I need there’s less for me to spend my DLA on (other than the things like extra heating and a higher food bill as what I’m able to eat is changeable), but as soon as I become more mobile the costs will go back up again. If someone could cure my M.E tomorrow I’d grab it with both hands, and happy look for a job as there’s nothing I want more than to be able to work. It’s frustrating as I saw the perfect job for me advertised- working from home data entry, around 40 hours a week. Pay was a little more than minimum wage. And I’m not well enough to do it- if there was even the slimmest possibility that I could have managed it I would have applied immediately, but I’m just too ill. I don’t want to be on benefits but I’m grateful they’re there.

Since I’ve upset myself now thinking about all the scrounger rhetoric and stuff (I really need to stop internalising it) I think I’ll go watch some penguin cam – that always cheers me up 🙂