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*I just found this in my Drafts folder, written in November 2009! Might as well post it now. I decided not to watch the film after writing this, as the reviews were SO bad.*

I have just finished reading The Time Traveller’s Wife by Audrey Niffenegger. I have read it before but I recently decided to read it again, partly because I am sending it to a friend and wanted to refresh my memory of it, partly because I loved it so much but my memory of it was getting hazy and the film has been made and before I rent the dvd I wanted to make the book firm in my mind to protect it from being ruined by seeing the film (the books are always better than the films, eh? But the film version can erase our memories of the book). Also I was listening to the BBC Ouch! podcast and they mentioned how it is basically a book about living with disability. Although I had got that the first time, I have been thinking about disability a lot more since I first read it and wanted to read it with that in mind…

Well, even though I had read it before it did not dilute the enjoyment, awe or emotional response this time around. I love this book!

I am not going to talk about it and spoil it for people who have not read it yet (including the friend I have promised it to, who will read this) but I would like to say that it deals with issues of living in a differently-abled body which behaves in unpredictable and unconventional ways (er, time travelling! As Ouch! said, it makes you wonder what will the disabilities of the future be?) and this is presented as a genetic condition. The book focusses on him living with this condition, trying to control his body, trying to be cured, effects on reproduction and relationships.

I really liked the way that his wife’s experience was so sensitively written. As anyone living with/caring for someone with an impairment, she experiences the compromises she has to make by association, how almost everything in their shared life is dominated by his condition, how she also has a different relationship to time and misses out on a lot of normal life experiences due to being in that relationship. Time is experienced differently by them both, not just because they are affected by time travel, but also due to the limitations brought upon them by his medical condition: living with disability. They both live for the good bits even if they are still compromised and always affected by it. There is a sense for him of not being entirely present in the present and feeling he is missing out on life, by thinking about other alternate times. This is something that I can relate to as someone with chronic illness who occasionally wastes time thinking about what I could be doing if I was better, rather than making the most of and appreciating what I am doing/can do now.

More than this, the universal themes of aging, embodiment, death, love, grief and loss are so movingly written I defy anyone not to identify with something in this book. Also a major theme is waiting. Waiting for better times, waiting for love, waiting for things to make sense. Who isn’t waiting for something?

Please note, this post contains some moaning but it does end on a fairly positive note!!

It seems that i started to take the progesterone pill almost 2 years ago (it will be two years at the end of June, see post from the time). I have just had my blood lipids checked for the second time, and while i was there i found out more about the results from the test i had last June. I was told at the time that my cholesterol was “a bit high” but at 5.2 or 5.4 (i have forgotten exactly) it did not seem too bad. Today i found out the actual problem is that my HDL cholesterol is actually too low (0.8 where it should be over 1.1 for a woman). I apologise for not knowing what these measurements mean or are measurements of, that was not discussed with me. Only i was told it is the difference between the two amounts which is bad, rather than just a case of one being dramatically too high as i was initially told. The HDL kind that i am low in is the one that protects from heart disease, so it does not sound too good. I will have an appointment with the doctor soon as the new test results have come to discuss if things have changed and what it all means.

The reason i am being tested is that being on the type of pill i am on (it is not the same as the progesterone mini-pill, it is slightly different, and works to stop my periods completely) can affect my lipids profile. Progestins do that apparently. I am not sure if they ever tested my lipids before i was on the pill to make it clearer whether this imbalance is directly due to the pill, or actually due to my illness in general. Apparently low HDL can be associated with certain conditions. I wonder if ME is one of them, especially seeing as i have read (somewhere) that heart-related deaths are higher amongst us, not that i want to scaremonger without evidence! Anyway i will get my results in a few days and see if anything had changed/improved this year. If not i may have to stop taking the pill – not an attractive prospect with everything else i am dealing with at the moment.

I am having various (ongoing) issues in my pelvic region, mainly pain-related and bladder related (possible interstitial cystitis – i am reading up on it – it often accompanies Fibromyalgia, IBS etc) and i wonder if the progesterone pill helps or hinders that. Also i have bad itching which continues to plague me (not long until my dermatology appointment, thankfully) and i wonder if hormones could play a part in that. Both are unlikely but i am getting very confused about what could be affecting what at the moment. I also am having a lot more (constant and worse in intensity) back pain and muscular tension which is also an ongoing problem and with my skin, muscles, pelvic area and all sorts all causing at times serious discomfort i am wondering if i have developed Fibromyalgia-type symptoms… I certainly have tender points on my skin (jump when lightly touched) but are they in the right places?! It all seems possibly connected: the itch, the bladder, the other pain… maybe my brain (pain) signals are just all a bit wrong – i just hope that the doctors can intelligently help me to understand it and suggest medications that may help with more than one thing, so that i don’t end up taking many more drugs, overloading my poor body and wondering what side-effects are coming from what. Already the POTS specialist wonders if Midodrine is contributing to my itch – i really don’t want to have to stop taking it to find out…

I do want to try to find some answers, even if i don’t really want to take more drugs as things just seem constantly a struggle, the itch has really got me down and just feels like the last straw on top of all the other symptoms i have. It affects my sleep and rest in the day, creates a stress reaction which is very physical and draining and it has really been getting me down. How can i manage my basic condition when i have all this discomfort? I am certainly not getting out of the house much and my quality of life feels almost as low as it has ever been, though i find this hard to measure. I really have been feeling the last year that although the Midodrine has helped to control my POTS symptoms to some extent; they are still present, progress has plateaued and other things have come in to take their place to disable me. The years just pass and so many ongoing symptoms do not seem to be addressed; like my back problems which i have had from day one, literally. I cannot believe that a) there is nothing that could help and b) that spinal health will not affect my overall health, particularly as many problems i have a neurological and the spine is pretty important in carrying messages etc from the brain… This is a subject for another post, and i start to ramble – just needed a little rant!!

Good things: my mum is visiting tomorrow, so i can have a moan, watch her weed my garden, have some fun, and be distracted from it all for a few days – i am really looking forward to that 🙂

I had three visitors last week (one, then a couple) and it was a full on social week for me with three evenings (had a break in between) with talking and catching up. It felt quite strange in a way and i have lost some confidence in face-to-face social interaction (except with family etc) but i really enjoyed it, coped pretty well energy-wise and felt ok to interact most of the time (and i want more! I resisted the urge to chain them up and keep them here). I did have a major crushingly tight headache which lasted about 3 days solid and other flare-ups as a result of the exertion, but i feel it was worth it for the pleasant distraction from my woes and a great break from the usual routine. I certainly can’t visit anyone else at the moment, so i may try to encourage people to come to me, though it is always a gamble and a certain amount of stress/pressure. Well, we are all accustomed to the “no pain, no gain” way of life, eh?

As i discussed in a previous post (https://ashy00.wordpress.com/2010/03/01/a-little-catch-up/) (and in the comments of that post) i am looking into wheelchairs. Today i went to a local charity for advice on what is available, what things to take into consideration, where to go to get the right one and such like.

The appointment was at midday and it felt early – i felt quite groggy and not properly awake, i was aching all over and felt quite weak. The appointment went fine and it was not too long. I had expected to try out different ones to see what suited me but in the end it was just a discussion. This was perhaps good as i am not sure i had the energy to be getting in and out of different ones. The woman was nice, but her voice was loud (to my ears) which did not help me hear what she was saying. I did manage to follow and i think i asked the things i wanted to, although she did not always answer too clearly. She did say in the end that they did not have any wheelchairs for me to try that would suit me, as we decided i need one with specific high back support, or even head support and good lumbar positioning. It was quite interesting that early on in the discussion she assumed i would just need a standard chair, without asking me at all about my issues or medical condition. It was not a major thing and she was helpful and open to listening and changing her mind, but i was surprised that even at a disabled people’s charity i was judged early on how well i look (though anyone who knew me would see i was seriously struggling! My partner could tell, i am glad she was with me). I would have thought they would have certain questions to ask before making such judgements. She did not ask about my medical condition(s), which is fine as it is not necessarily relevant, but to not ask directly about what issues/needs i have from a wheelchair was a bit strange, i thought. Anyway it was useful i think. I asked about reapplying for a Blue Badge (this is for disabled parking for those not in the UK) and also about the NHS wheelchair service and what to expect from them. I will try again for the Blue Badge at some point, despite being turned down before.

I briefly asked about scooters and powered chairs were mentioned but they did not seem viable options. I think i will see how the manual wheelchair suits me and how i find it affects my ability/experience of going out and that will give me more clues as to whether those other options could be useful in future. I think it is a big investment to get a mobility scooter for the number of times i am likely to use it. I cannot magically be able to leave the house much more often than i do now, chair or no chair; there are just so many other reasons i cannot leave the house, other than straightforward mobility issues. Unfortunately.

When i got home i took a while to wind down (despite not being awake in the first place!) as it took a lot of effort to get through the meeting. I went to bed after a while and had some strange sensations that have happened before.

The first has been happening quite often over the last few months, but i don’t remember it happening before that. It only happens when i go to bed in the day, not at night. I get these feelings of icicles running up and down my spine. It starts from the back of my head and runs all the way down my spine and into my legs in a wave of shivers and i feel really cold inside. Today i could tell it was going to happen and i took a hot water bottle and two hot wheat bags to bed with me and i still could not get warm for a long time. After about 3 hours i woke up (i had been asleep maybe an hour) and was so extremely hot i had to fling all the covers off! This is what happens: freezing, then unbearably hot. Very strange. Often i feel quite a normal temperature until i get into bed and it just starts up right away – today i already felt cold so i knew what was in store.

The second is a neurological-type thing. It used to happen a lot when i had a specific song as my alarm tone on my phone and i would hear it when it was not going off. Not like when a song is stuck in your head, but actually as if i was hearing it for real. It has not happened for a while but today it happened with my partner’s alarm. It went off and she turned it off, but i could still hear it. I took my ear plugs out to check if it was really there, and although i could tell it was not going off for real, i could hear it really softly still “playing” in my brain. Very odd. I am not worried as long as i don’t start hearing other imaginary things! I think it is something that happens when i am struggling/have overdone myself. If it continues she will have to get a better alarm ringtone, is all i can say!

I read a post by my friend today where she says she wants to pretend to be normal for a few hours, and it got me thinking. She says:

“But also I’ve been feeling this week like I just want one day, or even half a day, where I just get to be normal. Or pretend to be normal.”

Hell yes! I know what you mean. In fact last Friday after three weeks of planning, worrying and not feeling well enough, pacing the whole week before, watching the day itself grind so slowly along while trying not to use up any energy and rest as much as possible; I went out!

I just wanted so much to have an evening of doing something normal, feeling normal (or at least not really ill), having some much-needed fun and by and large i did. I had the best indian meal i think i have ever had and spent time with a great friend. It goes without saying that this was a rare occasion for me (but i will say it anyway) and that i have suffered the consequences since (but it was worth it).

I got dressed up (as much as my limited wardrobe of non-pyjama items allowed). I put on makeup for the first time in ages which felt very odd and like i was pretending to be someone else by hiding my pallor and ill-worn face: yes, pretending to be a well person. I sniffed it warily (it goes off and smelly you know when you only use it once a year) and i was feeling very out of practice.

I also had a big dilemma about whether to take my walking stick…

I quite often have this dilemma about my walking stick. Without it i can pass as “normal”, as able-bodied, though that illusion can soon dissolve and i need to explain myself anyway. If i am going somewhere by taxi and it is door-to-door with no walking or needing to stand and wait outside, and if i am not going to be alone, i will sometimes leave it at home.

Quite often when i don’t take it i find myself in a situation i did not expect and wish i had it with me, though it is rarely a major issue as it is not really a whole lot of help to me if i feel really bad. It has a seat at the top and this can temporarily help me if i have to stand still. Mostly it is a useful signifier to others that there is something wrong with me. People will be more accommodating if i ask for help or make a request to be dropped right outside my house, they will help me with my bag etc. It makes life easier and gives people warning that i cannot walk as fast or as far as they would otherwise assume.

It is nice to feel that i am escaping my ill life for a couple of hours, that i do not stand out from the crowd as a young (ish) person with a walking stick. It is nice not to attract questions and have to explain what is wrong with me to all and sundry and then have to use energy to deal with their reactions and questions. But should i “pass” in this way? In a way i feel that it is only passing due to the assumptions of people i meet that i am able-bodied and healthy, so really the problem lies with them doesn’t it? But i cannot help but feel it is important to make visible that not everyone who is young (ish) and looks healthy really is. It feels like pretending and hiding to deny my disability by not having my stick, even though it is almost useless in a practical sense!

I wonder if this feeling comes partly from my experience as a lesbian – another situation where it can be easier to pass/pretend and rely on other people’s assumptions that everyone is straight. I make a point of correcting people when they assume i am straight (unless i feel threatened, and even then i feel guilty for not challenging them). I cannot divorce my personal actions and identity from their political impact, small as that may be when i am hardly a visible part of society 99.99% of the time. Am i using an unfair priviledge to be able to pass as straight, able-bodied etc?

Should i want to be “normal”? Should i have got over that by now and embraced my disabled identity? Well i would say in many ways i have, but being chronically ill 24/7 with no break is not something that can be embraced and loved at all times – so why do i feel a traitor to the cause? I actually do not even hope to be “normal” again or 100% well (i cannot dare to hope that far, and it seems such a no-no to even speak of it within the disabled community – but hey i am used to not fitting into the club) but a break from it all and to try on a different identity that is more a choice would be nice occasionally… is that wrong?

Am i the only one who even thinks about this stuff?

The last few weeks i have been gradually starting to think about Christmas and how to manage it, and as i have continued to feel not so good lately I was feeling a bit daunted by the whole thing. So I thought about ways around it and came up with this. I have sent it to everyone who may consider giving me something.

I am just posting this here as other people with ME may feel the same way about Christmas and seeing that i am doing this may help you think that there are alternatives that might not hurt everyone’s feelings… I have had two responses so far and both were entirely positive, so i still have one family member and one friend talking to me!! phew!

To all my lovely friends and family,

 As most of you are aware, shopping in shops is not something I can do, and last year I did all my Christmas shopping online. I did, however, find it was still a lot handle as I have to limit computer-time and I also find organisation and making decisions about what to get for people quite exhausting when my brain is not working so well. The hardest part though was receiving the deliveries, as I cannot stay out of bed all day nor can I jump up from bed and launch myself down the stairs without risking falling over or at least making myself feel very dizzy and faint. The memory of last year has made me question what to do this year as I have been going through a bad patch and just cannot face it. ***** says that no-one will mind if I just don’t get them anything, but I was not comfortable with this, mostly because when other people start giving me things I will feel so guilty, and it would feel like I have mislead you all: SO, my plan is to a) let you know early so that you have no expectations and hopefully will not have got me anything yet and b) to propose an alternative: 

I would like to propose that instead of giving gifts we just exchange cards. 

If anyone really wants to give me something (please do not feel obligated), I would really like a donation to MERUK (it can be done via my justgiving page (see link below), it is very safe and straightforward to use). This is a potentially very exciting time in the ME-world. A strong link to a retrovirus has been found in the US and the UK charities are keen to fund studies to replicate and expand this research to find out what this could mean in terms of the development of a diagnostic test, a vaccine and even possible treatments in the (hopefully not too distant) future. It would give me enormous hope to feel part of making that happen and would make me just as happy as getting an actual present, if not more so. More info for those who want it is in the links below.

 If you have a favourite charity, please let me know and I will happily make a donation instead of the present I would have bought for you. If you do not make any alternative suggestion then after Christmas I will make a donation to the ME charity using what I would have spent, so if you have another preference, don’t be shy!

 I hope this is ok with everyone, thanks for your understanding,

Ashy xx

 

My Justgiving page for ME Research UK is: http://www.justgiving.com/jfqashy/ To donate you just sign up for a justgiving account if you don’t have one already, then click to donate. It is easy and you can really boost your donation if you are a UK taxpayer by choosing gift aid. 

The Whittemore Peterson Institute in Nevada that made the HMRV discovery: http://www.wpinstitute.org/  (there are links to articles in the media about the discovery and also some good FAQs about ME in general and also about the retrovirus HMRV and what it could mean. 

ME Research UK: www.meresearch.org.uk (And their reaction to HMRV from their homepage: http://www.meresearch.org.uk/information/publications/xmrvfind.html)

(This is one of several posts i have written for ME Awareness Day – click here to see my main page and link to the other things i have written, and click here to see what everyone else is blogging about!)

I have been mulling over what to write about for ME Awareness Day 2009 for the last few weeks… there are so many issues that i could talk about, personal, political, medical – but in the end i thought i would keep it simple (that was before i started to actually list my symptoms!) and share with people all the symptoms i have experienced in the last few years (I have been ill for over ten years but will focus on the last three years since i left my part-time job when things got worse again. Apart from the initial period of illness, the past three years have been the most consistently severe).

I want to convey the very important message that Chronic Fatigue Syndrome (my official diagnosis) IS NOT JUST FATIGUE!!

(I should mention here that i also have another (additional) diagnosis of “POTS” (Postural Orthostatic Tachycardia Syndrome) which is a collection of symptoms relating to my Autonomic Nervous System not working properly. Apart from the tachycardia and nearly passing out, I cannot really separate the two illnesses or sets of symptoms as they are interrelated and i have no idea which causes what much of the time, never mind if they are actually part of the same condition/illness. Quite a lot of people with CFS/ME also have POTS and most others will have symptoms of autonomic dysfunction to some extent; particularly those who are moderately to severely affected. These can include: Dizziness and lightheadedness, digestive problems, problems with standing and being upright (feeling much better lying down), lack of temperature control, circulation problems and blood pooling in lower limbs, and many more). 

I do not like the name Chronic Fatigue Syndrome (CFS); i think it does minimise the complexity of the illness and lead to many people claiming to have it, or being diagnosed with CFS, who actually do not have it. People can be tired out and run down for many reasons and this can drag on and affect their lives very negatively, and i have every sympathy for them, but it does not mean they have the same illness that i have. Maybe we can all get appropriate treatment once this is sorted out. I won’t get into all the ins and outs of this issue here (the variety of diagnostic criteria used to diagnose and the implications this has on credible research into the condition/or conditions) but i feel it is really worth emphasising the full range of symptoms and bodily systems affected by CFS/ME, many of which perhaps do not get mentioned.

It particularly frustrates me when doctors and other medical professionals (who should know better) say to me, when i am feeling particularly bad at an appointment, and have lost the ability to speak clearly and express myself:

“Yes, I know, you are feeling very tired today”

I suppose they are attempting empathy and trying to make me feel understood, but i just scream inside that they know nothing if they still think of CFS/ME in this way. I do NOT feel tired: i feel physically and severely ILL. I feel that essential bodily functions/systems are shutting down one by one and it is truly frightening to experience my body in this state of crisis.

I often feel i am moaning on too long for people to tolerate if i talk about my symptoms in detail, in fact i often do not focus in on them myself unless they are severe as it is just easier to get through the day by distracting myself from them/ignoring them as much as possible… but here they are in all their glory…

me-symptoms-picture
 
(List of symptoms included at end of post in case you cannot read the image)(To see the image larger, click on it, which will link to Flickr)

 This is just a personal picture,of course, and other people will have a different set of symptoms and will experience my more minor symptoms as major and vice versa. I have found that the symptoms seem to evolve and change over time, some improve, but often others move in and take their place, so it feels that quality of life does not change much overall.

The implications of these symptoms obviously affect every single minute of my life, and everything i (attempt to) do. Everything i do manage to do comes at a high “price” in terms of having chosen it over other things (this often means choosing between things that others would deem as all “essential” tasks to do in a day) as well as in terms of what is officially called “post exertional malaise” or otherwise known as “payback” (if i do something that uses too much energy/exertion i will then have a period of hours/days/weeks where i am operating at a much lower level of functioning and experience many more symptoms, and more severely, than usual) so every little thing needs to be considered as to it’s importance in relation to how strong i am feeling at the time, a wearying decision-making process in itself, and always a gamble…

I have made two more pictures like this, about other aspects of ME: the impact of these symptoms on my ability to function, and the things that people (mostly medical professionals) have said to me about my illness. Click here to read that post too!

Please do not use my image/artwork without asking!
Creative Commons License
This work is licenced under a Creative Commons Licence.

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Symptoms: Vertigo, noise sensitivity, tightness of scalp, sensitivity to light, lack of stamina, nosebleeds, dizziness when standing, sitting, moving, speaking or concentrating, tinnitus, TMJ (Jaw joint) dysfunction, breathlessness, light-headedness, eye muscles slow to react to light/focus, tension headaches, clicking of back, neck and other joints, facial paralysis, dry eyes, constant thirst, aching eyes, blurred vision, mental fatigue, tri-geminal neuralgia, neck, shoulder and upper back pain and tension, painful points on scalp and upper back, hormonal issues, reactive depression, swollen and painful lymph nodes, shivering/goose bumps/spasms when not cold, sensitivity to movement in visual field, tachycardia (POTS), memory and concentration problems, difficulty speaking, pallor, weak bladder, almost fainting, pins and needles/severe itching of legs, shaking, muscular weakness and fatigue, ticks/twitches in muscles, lacking in energy, paralysis on waling, defecation syncopy, IBS, freezing cold feet when body hot, lack of stress tolerance, movements slowed, need to be horizontal and have bed-rest in day, weight gain/loss, post-exertional malaise/payback, disturbed/prolonged sleep, generalised weakness, lack of body temperature regulation, excessive sweating, hot flushes, trembling leg muscles, walking difficulties, sensitive skin – easily irritated and painful to touch, heavy aching thighs.

(This is one of my “Blogging for ME Awareness Day” posts – see the rest of my posts for this event here, and what others are writing/doing here!)

Here are some additional pictures, following on from my previous post and the image of my Symptoms.

One is showing the impact of my symptoms (see the connected post first) on my life and ability to function, and the other is  some of the things that people say to me about my illness.

Impact:

impact-picture(click on the image to link to Flickr, where you can view “all sizes” and see the image much larger, to make it easier to read. The text in the image is reproduced at the end of this post for those using a screen reader).

There is much more i could have included in this image, had i the space, and the impact of the “things people say” image (below) would be another picture in itself!

Things People Say:

 things-they-say-to-me-picture

 (click on the image to link to Flickr, where you can view “all sizes” and see the image much larger, to make it easier to read. The text in the image is reproduced at the end of this post for those using a screen reader).

The bold quotes are what medical professionals have said to me, the unbolded are the general public. Of course these are just a selection, some i have heard many times. I have focussed on medical ones as it hurts the most coming from them…

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The effect of all of this is, of course; social isolation, depression, frustration, difficulty maintaining relationships with friends and family and meeting new people, difficulty pursuing interests, difficulty being a member of any community (except the online ME community – thank goodness for internet) and much more… 

…and we are largely left to get on with it, or to fight: for credibility, benefits, medical attention or other support, and for research into treatments and causes which is only just beginning, and not government backed.

I feel there could be many more pictures to make in this vein, but perhaps these three give some idea and increased awareness of the lot of people with ME…

One other idea was to label the body with the findings of abnormalities from medical research to date, to show how much has been discovered already about the physical basis of this condition, but it has taken me weeks to do what i have done already for this year’s ME Awareness Day and the thought of searching through medical info and jargon was a bit overwhelming! Maybe another time…

Please do not use my image/artwork without asking!
Creative Commons License
This work is licenced under a Creative Commons Licence.

******

text from pictures is below:

 Impact:
Travelling anywhere very challenging due to sensory overload of visual stimuli (light/movement), noise, speaking to people, strong smells; plus the effort of getting ready, stress of remembering what I need, pain from bad seating, having to walk/stand on demand, and more, mean the I often feel terrible after only short journeys, meaning I am not well enough to do whatever I went out for and need to get home to bed asap to recover. If this is not possible I can become very ill and be barely able to speak of walk.
Being in bright, noisy, hot, busy environments like restaurants, cinemas, shops or other social settings is very draining.
Sitting on any chair/sofa that is not fully supportive of spine and head soon causes pain and takes more effort/energy to hold myself up. It is hard to know in advance if there will be anywhere suitable to sit when I go out. If there isn’t, I have to leave much sooner.
Payback after anything more than a small amount of activity (how small is variable, as are recovery times)
Moving around the house, climbing stairs, rising from chair can be hard.
Walking any distance challenging/very draining or simply impossible.
Need for regular bedrest during the day, often after only an hour since getting up the last time.
Cognitive problems cause difficulty with memory, understanding what people are saying to me, being able to respond quickly enough, reading and taking in information, and concentrating on these things makes reading, having a conversation (phone or in person) organising myself and so on, very exhausting. A five minute conversation can put me in bed for an hour or more.
Standing very difficult: to cook, clean teeth, dress, shower, walk, queue, do housework, talk at the front door, stand to chat, and much more are affected.
Muscular weakness makes reading, being on the computer or doing creative things hard because my eyes get tired, painful and blurred quickly; as well as obvious things like walking, carrying even a light bag for a short time, housework… repetitive things like chopping things, stirring, rubbing (eg to wash hair) are particularly hard as muscles can seem ok initially then lose power fast.

Things they say to me:

(The medical professionals)

I have met lots of people like you, I can fill out these medical questions for you…

 I feel you have helped me more than I have helped you

You don’t look ill

You just want to be cared for – you can’t face adult life and responsibility

Do you do pacing? So how do you know your limits if you never reach them?

You will never get well if you are depressed

What are your hopes and goals for 2008?

Your illness is certainly mostly psychological

If you look hard enough into yourself you will find the reason you continue to feel ill

It could be the position of your bed… in relation to ley lines

Everyone has baggage and issues – what we need to work out is why people with ME don’t deal with them in the normal way and become ill

You are depressed. You don’t feel depressed but it is manifesting itself physically

Just try turning the tap on a little bit at a time rather than having one big cry

Who do you blame for your parents’ divorce?

 

(Other people):

 

We all get tired

Your life sounds like everyone’s ideal life

There are much worse jobs than this, you don’t know how good you had it here

You should go to Pakistan and see a witch doctor, my uncle couldn’t walk at all, NHS couldn’t help him: now he is fine!

You’re too ill to work? (chuckles) what’s that like?

Do you believe in God? You should…

I was off work once when I hurt my back, but after a few weeks I had to go back: I had no choice

Yesterday, i went to see the POTS specialist! It was a positive experience, and although i have realised that i have been pinning a lot of hopes on her and her potential treatments for me, i have not lost that hope since speaking to her. It is the first time anyone has really tried to help me with medication (except painkillers/antidepressants which the majority of people will take at some time), which is the way many illnesses are treated and managed, but to someone with CFS/ME it feels very novel.

She said to me that half of those with POTS experience ME-like symptoms of weakness, fatigue etc and about 27% of people she sees with ME have POTS. I said “oh i am one of the lucky ones to have both” in a sarky way, and she said “well yes in a way you are as it means we can offer your some medication to help manage it.” So if they are not completely distinct entities, it could be said that i have the type of ME that lends itslef to POTS and that there are things that can be tried to improve my quality of life… although my first thought was that she was putting a very positive spin on the fact that as i have both it is a sign that my illness is on the more severe side of the spectrum in the first place! Take your pick! 

I had similar tests to those i had before and again my blood pressure was low and my heart rate was very high on standing – it was 152 beats per minute at one point! They always ask me how i feel when this is happening, and it is quite funny, as i feel ok, just a little lightheaded but it is so normal to me now that i think i have forgotten what it feels like to stand normally. I tell them i feel ok, and they look very doubtful! They only make me stand there for two minutes, i think any longer and i would struggle as i do notice i am swaying more as time goes on and my lower legs tingle and feel heavy.

So they did the tests, and then i spoke to the specialist who is really nice (as is everyone in the unit, it seems). She has given me Midodrine, a Vasoconstrictor, at a low dose to start with. I have taken one yesterday and one this morning and so far, no bad reaction! There are not meant to be many bad side effects, especially on a low dose, but i know i am quite sensitive to drugs so i am always worried about side effects. The ones to look out for are all things i experience anyway, so it may not be obvious unless a big reaction. The doctor says that minor side effects should be temporary anyway. Also it is good as i can still take the painkillers and sleeping tablets that i sometimes take as they don’t affect each other… result!

Although this drug is obviously quite a serious drug, and is recommended long term only if it has a marked improvement for people whose quality of life has been greatly reduced by POTS, i feel that it will be so worth it if it helps me. My quality of life in terms of being able to care for myself and get out and about has been so much reduced over the last three years and has felt like a steady decline, that any turn around in that trend is worth some long term risks. I feel lucky that unlike many chronically ill and disabled people i have not had to pollute my body with drugs just to stay alive, or get through each day, regardless of the side effects and the impact that may have later (and i have a prospect of “later”). Because ME is not (seen as) a terminal illness, at least, most people live with it, even severely, for decades; there is always a feeling that we want to preserve what we have got, health-wise and not jeopardise the future by taking risks now, in case we get that miraculous recovery and because we don’t know how long we will have to endure this if we don’t. But it gets to a point where the implications of living such a limited life are also so “dangerous” on many levels that any drug that can help is welcome. That is how i feel now. Not that this one seems particularly risky but it makes me think of these issues. The prospect of taking a drug every day for the forseeable future is strange for me. I only started taking the contraceptive pill recently and that was enough of a decision, although i am so pleased i am on it now. I realise this is a priviledged position, but it also comes from the fact that there are no drug treatments like this for ME.

It is interesting to compare the way i have been diagnosed and treated for two conditions that are very similar in cause (often viral, but may be other factors) and which affect very similar bodily functions (autonomic nervous system). No psychologist assessments so far for POTS! Just go in, have a test, and take some tablets!

It seems that many of my worst symptoms could be attributed to POTS, so there is great potential for improvement, if we can find a drug which works for me…

Top of my list would be: ability to stand up for more than a few seconds/minutes which is variable and unpredictable, ability to walk for more than a few minutes without making myself feel very ill for hours or being worried if i can make it back to the front door/taxi, not having hot flushes many times a day, not having blurred vision, not having such constant pain and tension in neck and shoulders and also bad headaches practically every day… there are many others but that would be a start and don’t want to ask for the moon on a stick… so no pressure then doc?!?

Interesting what she said about pain, as she said i may have trigger points (this is known as myofascial pain, and is what people with fibromyalgia typically have, and many people with ME have it to some extent as well. I have just bought a book about it, The Trigger Point Therapy Workbook, so i hope to work on my trigger points soon as well, once i have found the energy to find them and understand the book!), but she said that there is a pattern of pain associated with POTS which she called “coathanger pain” which is pain across mid back, shoulders, up the neck into the head… this is my exact pain pattern! She says it is caused by the muscles being starved of oxygen as blood flow in upper body is limited by POTS and the larger muscles show most distress. No wonder my brain hurts!! ha ha.

So my brain is literally hurting now and i am sure there is more to say about POTS but it will have to wait. All i will say to close is that i had no idea how much the themes of my first blog post on Hope and Acceptance would be so much the themes of the whole blog, it seems it always comes back to this for me. Now i have some Hope again (the most i have had since early on in the illness when they were still telling me i could recover and i still half belived them) and it is very dangerous territory… but maybe i am becoming more experienced in coping when hopes are dashed? i “hope” so!!!!

Well, it seems as though i may have “POTS” (Postural Orthostatic Tachycardia Syndrome). There is a good website here that explains what it is, click on the links under “POTS place” on the left hand side…

I have been taking part in a research study about CFS/ME and Orthostatic Intolerance and have been to the hospital three times in the last month where i have been monitored (heart rate, blood flow, pressure etc) while lying down for ten minutes, then standing for two minutes. It seems that when i stand, my heart beats very fast to try to deal with becoming upright, which it seems my body does not do very well. The specialist asked me if i would be prepared to see her as a patient as there a number of drugs that she can try to manage the problem (it can’t be “fixed” as it is a problem of my autonomic nervous system, as CFS/ME is as well) and maybe (maybe) make me feel a bit better… which would be nice as i have been feeling pretty awful recently and it feels as if things have been just getting gradually worse and worse over the last couple of years or more that i have been off work.

I have been having problems with dizziness and feeling lightheaded and weak, particularly when i stand up, but at other times too (sometimes when sitting still), since i was still at work, and it has been a major problem for a long time. I find it very hard to stand for any length of time, which rules out things like waiting at a bus stop (even if there is a “seat” to perch on as you are still almost standing), i can’t queue in shops and even walking in general is pretty hard. If i bring on a “funny turn” in this way, i have to get home and to bed as soon as possible as i feel so awful, just lose all power and energy. Even when i don’t feel dizzy as such, i find it very tiring and hard work, and feel generally weak and lightheaded. I find it hard (and often impossible) to go anywhere or do anything much, basically. My doctor advised me to drink isotonic drinks and eat more salt, and said she didn’t think i needed to see a specialist as although my blood pressure drops a bit when i stand, she thought it was mild… “I just think your ME is quite bad at the moment”. Hmm yes… but why, Doc?

So that is partly why i signed up for the research study, and now i am glad i did, but i also feel that i should not have had to… apparently this condition is common in people with ME, so why has it taken so long for someone to notice? Maybe as it is difficult to treat and not life threatening they don’t bother… all the same it seems it can be very debilitating and any improvement that can be made would be most welcome. I don’t like taking medication and am a little concerned about what i will be taking, and if i will take it permanently, but life has been very limited and anything that can make everyday things a bit more possible or less exhausting would be nice. I am trying not to get my hopes up, of course…

In ten years of illness, this is the first time a physical test has come back as abnormal. I wish i had had this early on so that i would have had something to wave at the people who said it was all psychological (the insurance company, in particular, i am looking forward to telling them!). Maybe i am getting ahead of myself, i have no piece of paper to wave or even appointment with the specialist as yet! But in the couple of minutes she spent with me she seemed to be speaking as if she thinks i have it. Reading about it certainly rings true, especially now that i know what my heart is doing. She asked me if i ever noticed my heart beating fast when i stand up, i said no! It is not pounding away heavily or anything, just faster, and who knows what is normal without actually focussing on it. I have noticed it, but mostly when lying down, i think just because it is quiet, maybe the pressure on my pulse of the pillow etc etc. maybe it takes a while to calm down/recover to a normal rate after lying down…

Since i got home from the hospital, i stood up against the wall and took my pulse for 15 seconds after one minute of standing: 31 beats (124 beats/min), then i took it after 5 minutes and it was still 29 beats (116), so it obviously does not just happen when i first stand, but continues for a while… i rarely can stand for much longer than that anyway! Over 120 beats per minute is tachycardic apparently, so when i initially stand it is over that, over 100 beats per minute is still seen as abnormal.  Even though i knew there was something wrong, it was quite a shock to know that my heart is doing that. Now i know it is, it seems so obvious and i notice it a lot, although i am trying to ignore it!

I am a little confused about the diagnosis, as the symptoms, likely causes etc are so similar to ME, that there must be connections. Do i even have CFS/ME? I think so, as i am not sure that i have had POTS for the last ten years… it has maybe just developed over time or become bad enough to qualify as “POTS” but maybe have had issues in this department throughout the illness? Who knows. The lightheadedness and dizziness i think has never been as bad before as in the last couple of years, but has been present at times. This website speaks a bit about the connection…

Chronic Fatigue Syndrome (CFS), also known as Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), is somewhat related to POTS, at least in terms of a similarity of many of the secondary symptoms. In Europe CFS is called myalgic encephalomyelitis (ME). Orthostatic intolerance, a broad title for blood pressure abnormalities such as neurally mediated hypotension (NMH) and POTS, is a common symptom of some types of CFS. Neurally mediated hypotension refers to patients who get lightheaded when standing due to a defect in their nervous system’s regulation of blood pressure. Patients do not need to develop tachycardia to qualify for a diagnosis of NMH. The Center for Disease Control now estimates that over 1,000,000. Americans have CFS. Various studies suggest that more than one 100,000. Americans have POTS. Some percentage of patients have both POTS and CFS. The Center for Disease Control has found at least four distinct forms of CFS, and that some forms of CFS cause abnormal heart rate and blood pressure issues (POTS and NMH) while others do not.

Well, who knows… i look forward to having some questions answered when i get my appointment through. I hope it is soon.

Maybe this “new evidence” will help my DLA appeal as well… fingers crossed!

ME/CFS Awareness

ME/CFS Awareness

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