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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:
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)
Quote from Duncan Bannatyne in today’s Observer Magazine:
“I can’t be bothered getting ill – life’s too good”
Yes, Duncan, that’s exactly how it works; and yes you are so much of a better person than me. Wow, if only i had your attitude and lust for life…
Well, it is that time of year, after all.
It will be my second holiday as i went to Holy Island (with my partner and dog) in February, which was a great week and did me so much good. See my post about that here. I was only saying recently that a) the year is flying by and i don’t feel like i have done much apart from our holiday and b) if it wasn’t for that holiday i would not have taken many good pictures this year as yet, which was my main resolution for the year: to get out more to photogenic places!
So this time i am off to Scarborough again for 4 nights. I am going to the same place i have been twice before, once with my sister and once alone. This time i will also be alone. My partner is going to Spain for work reasons and i really struggled last time she was away, and had quite a lot of “payback” in recovery from being alone, so i thought i would go away too. At least this way i can have my meals made for me, have no washing up to do and hopefully have some fun as well along the way. If i am going to overdo it, i may as well have some fun!
It was/is a bit of a gamble. I had the idea a couple of months ago and was operating at such a low level health-wise then that i thought there was no point in going, as i would find the journey too hard and not be able to leave the hotel at all. The last few weeks though, apart from the odd blip and a series of very bad headaches, I have been feeling stronger and i think now there is a good chance i will deal with the journey ok. That is, as long as the disabled assistance turns up WITH the wheelchair I have booked to help me change trains, unlike they did at one point in my journey last time i went - ”they are all being used” was the excuse… hmm i only booked 2 months ago!!
I also think because it is summer this time i will be able to sit outside more easily. Last time i only left the hotel once and went for drink in a pub as it was December and there were not many warm options. This time i can sit on the beach, in the park, or just in the garden at the hotel and that will be much better. I am taking a couple of cameras and a notebook and hope to be creative too (maybe a haiku or two!?). (i know i am repeating myself from a previous post here, but never mind, it is worth repeating myself when i am excited!).
I have been able to read more lately as well, as my eye muscles seem stronger and my blurred vision is less regular and my powers of concentration are a bit better too; so i am taking a (hopefully) good book of short stories to read as well: The Winter Book by Tove Janssen (of Moomin fame)… she wrote one called The Summer Book too, but why be seasonally correct?! I have read the intro by Ali Smith (who i admire greatly) and she makes it sound so amazing that i hope the book is not a let down after such high praise!
I can have a massage or two while i am there and hope to meet and chat to some interesting people like i did last time. The hotel owner has promised to help me wash my hair mid-visit and to cater for my odd dietary needs, so off i go!
Wish me luck! I shall catch up with you all next week…
I have filled in the patient questionnaire and sent it off for the All Party Parlimentary Group (APPG), filled with my experiences of the services i have received for my ME/CFS…
find details on the ME Agenda blog: http://meagenda.wordpress.com/
Apparently there are criticisms of the way it is being carried out and not all ME charities are supporting the enquiry, but i felt it was important to get my voice heard anyway. The more people that read about our experience, the better, and it is a public record.
Even if you have not received any “services” as such, or do not have access to any of the CFS centres they set up, it may be worth telling them that and of your experience of the NHS? There is still time – deadline 20 July: here is a link explaining what they need: http://meagenda.wordpress.com/2009/06/29/rime-nhs-services-inquiry-notice-6-26-june-2009/
and here is a link to the actual questionnaire: http://meagenda.wordpress.com/2009/06/15/appg-on-me-inquiry-into-nhs-services-patient-questionnaire/
I was so pleased to read this letter in response to the goverment’s paltry and misleading/inaccurate response to an e-petition that i signed, asking that someone appropriate from the government attend the Invest in ME conference and, er, maybe learn something:
well put!
(but when will they start to listen…)
Well, It is International ME Awareness Day 2009 on May 12th,
AND also the first anniversary of my blog!
It has been quite a year for me, health-wise, but you can read about that in previous posts…
Many people are making it into ME Awareness Week and even ME Awareness MONTH, so i thought, why not do a few blog posts throughout the month on various aspects of this illness, to do my bit to spread some very important information and awareness about ME.
I know, i know, there are hundreds of illness out there and no-one can know all about them all, so what is the point? Well, if you read the blue ribbon badges running through this post, you may get a few reasons. ME has been getting a raw deal: it is misrepresented by the media, and (deliberately in some cases it seems) misunderstood by the medical profession, and given next to no funding by the government into its cause or into treatments - despite the large number of people it affects and how severely. We are offered nothing except coping and “management” techniques – most of them really make little difference to our experience at all.
Just by reading this and understanding that it is not “all in the head” and not just about “liking to lie in bed all day” and that so much more could be done and needs to be done to give people with ME (pwME) an equivalent level of care and credibility to other equivalently serious diseases; you are helping to change general opinion about ME.
The more people that know what it is like, and can challenge people who laugh about pwME in the pub (they do – i have heard them) and who call it “Yuppie Flu” (as if we would get up and work if we needed money badly enough); the less the powers that be will be able to plead ignorance and ignore the facts – we need to turn the tide… AND, next time you meet someone with ME, or someone you know becomes ill with it, you will know enough to make them feel less isolated and that there is no support or understanding out there for them.
I will post links to my individual posts here so they are kind of organised ( i will update this as i add new posts)…
- The first one is my exploration of all my Symptoms, to try to show that ME is not just about feeling tired, there is a LOT more to it than that.
- I then did a second post to follow this up, about the Impact of those symptoms. on my ability to function/live life, and also the Things that people say to me about my illness
- Then there is: You look well!
- (maybe more to come!)
If you want to read what other pwME are writing about, and to find lots of information about ME, go to http://meaware.wordpress.com where RachelCreative has been working hard, creating these badges and the site as a hub for all of us who are “Blogging for ME Awareness!”
We have all put in a lot of effort and appreciate you coming to take a look 
So, feel free to have a read, and if you have learnt anything, or were surprised by anything i have written, let me know! I am really interested to know what people who do not have ME know about it, what messages about it they have picked up along the way, and if i, or any other blogger for ME Awareness has changed/challenged any of that, or if you already had a pretty good idea already…
Also see this great & imaginative campaign to raise One Million Pounds for ME research this year: http://justfourquid.com/ Let’s do it!
(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…
(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!
This work is licenced under a Creative Commons Licence.
******
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:
(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:
(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…
*******
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!
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
(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!)
I was reading this great blog (as part of Blogging Against Disablism Day (BADD) click link to read more!) and saw an excellent paragraph in it, which was actually taken from here:
Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker than ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.
This really made me smile and pins down something i have been bothered about in the back of my mind for some time: Why does it annoy me so much when people say “You are looking well”, or “You sound good” or whatever. I always feel a bit guilty about feeling so prickled by it, when they simply want me to be feeling well and to be improving with all their hearts and are just expressing it… but it feels like it is just a conversation to make them feel better about it; to let them off the hook; to avoid facing the truths about my illness. When i try to explain that they have simply caught me at a good moment and that in general nothing has changed, i get this look, as if to say “Why are you denying improvement? Don’t you want to get well? Be grateful for what good times you have!”
(I must say i am more tolerant of this when it comes from people very close to me who do know largely what my life is like or who see/speak to me regularly, as maybe i do sound a bit better than the last time, but i am safe in the knowledge that they know this does not mean anything more than that, that right now i can speak, but afterwards i will be exhausted and i may not be able to…)
I may look well because i have spent all the day up to this point (and probably yesterday too) making an effort to be clean, have had my hair washed, to have sloughed all the unsightly dry flaky skin off my face and moisturised, to have got out my nice clothes, rested effectively and eaten sensibly and taken a sleeping tablet, a painkiller and all the other things that i need in order to ensure i can function for this occasion of seeing you. I may even feel quite good after all this planning and preparation and be enjoying myself in this rare foray into your world, but like Cinderella, the mirage will soon fade, and i will feel so ill and have so many extra symptoms over the next few days in “payback” that i really cannot just forget this and enjoy “looking so well”. It is not your fault, of course, but how i look at the moment is irrelevant to the bigger picture. “Looking well” can sometimes feel like a curse and a barrier to understanding.
The other common exclamation is “Isn’t it lovely weather, that must really help you!” It helps me in the same way it helps anyone else, and yes, it is nice now that spring has come that i can sit in the back yard and get some fresh air and sunshine (occasionally) and have a change of the usual four walls to some al fresco four walls with birdsong and the like, but it is said to me as if it will actually make me well… My illness is not caused by depression, i actually don’t think it is perpetuated by depression (it just makes it harder to live with). To suggest that all i need is some sunshine for my severe and chronic health condition to improve is really irritating, and again i feel so guilty for being grumpy about it and usually just say, “oh yes it is nice to have nice weather” (and think “but i feel as ill as ever)”.
So now you are reading this and thinking “well i didn’t mean anything by it, what the hell am i supposed to say then? Nothing?” No of course not, but please, just ASK how i am. If you must, you can ask if the sunshine helps me(but don’t expect a sunny answer to that one – my patience is wearing thinner and thinner on this issue).
When you do ask me how i am, of course, that opens up a whole new set of issues: Do you really what to know how i am? Do you want details? Do you want to understand what my life is actually like? Or do you want a “Fine thanks” or a “Not bad today” with no details? It is hard for me to know. Even if i know you really do care and want to engage with it, how can i explain how i am? How can i quantify my wellness or illness in a way you can understand? Sometimes i can say i am “better” but do you know what that means? Do you think i am on the way to getting properly better? Or do you know i mean a-tiny-bit-that-only-a-chronically-ill-person-would-notice-as-an-improvement-and-it-could-all-change-in-the-next-five-minutes-better?
I find when asked “how are you?” these days, i just say “i am ok right now thanks” or something along those lines, because, of course i have been better, and i have inevitably been a lot worse (well i am having a conversation, so evidently not SO bad) so everything else is just in between these two… how i am changes minute by minute, hour by hour and day by day but also not a lot really changes.
So i appreciate you asking, and that you do care, but know that these questions are so loaded for me, and there is a lot more going on behind my reply…
