how do i feel about feeling good?

This may seem like a silly question, of course i am very happy and excited to be having some much better days, but i do have mixed feelings…

I also know that i am getting very ahead of myself in writing this at all as it is only a week or so that i have had this real buzz, and hardly all day everyday…  it could be just a post-holiday buzz? It does come on the back of gradual improvements over the last few weeks/months and my change to a higher dose of Midodrine a couple of weeks ago though, so maybe it may be here to stay???

Firstly let me explain. I went to Scarborough for my holiday, i got back on Sunday (a week ago). I rested for three days and did not feel too great initially, but by Thursday i felt up to going to see a friend and her baby. I went by taxi both ways as it would be a bus and then a bit of a walk otherwise, and i wanted to save energy for the visit and not overdo it so soon after the holiday. I was there about two and a half hours, mostly lying on her sofa but chatting and playing/interacting with her son. I also had my favourite taxi driver both ways and we did a lot of talking on the journeys, so it was quite an extended time of activity. I had a great time, and although i was exhausted afterwards i only had one rest day, then went out again yesterday!

So yesterday i went with my partner to the garden centre. They have a wheelchair available and we have used it before, but as i only wanted to look at plants and felt pretty good, we did not bother. I sat down a couple of times but felt fine, and we were there quite a while in the end. I was desperate for the toilet by the end and they didn’t seem to have one, so we stopped by a pub along the road and sat outside for a quick cuppa and to use the facilities. Then we went to Tesco and i went into the health food shop which is near the entrance and got a few things, then we went home. All in all this was a lot of walking about and i had felt good and really enjoyed it. We got some beautiful plants to cheer up the backyard, a couple for the front garden and two freebies as well!

 

When we got home i felt a bit less ok, so lunch was made for me and i had a lie down. However i could not sleep as too excited and after a doze i got up again and we did some potting up type activity (i was mostly instructing but still active). Then in the evening we sat outside and had a BBQ in the yard, admiring the new plants in the sunshine.

 

 

 

 

We stayed out until 8pm playing cards and chatting and it was really good. I was amazed at my stamina as it had been a long day but i was buzzing with happiness and excitement about feeling so good, just as i was on my last day in Scarborough. The Red Arrows flew by and did an amazing stunt right where we could see it, a tight and high loop in the sky, in formation, with them all plummeting earthwards together, then fanning and levelling out at the last minute – leaving a big smokey loop in the sky… it was very dramatic and we were so pleased to have seen it as it was over in a flash.

I was tired by the time we went inside but very happy. One possible warning sign of overdoing it is that i have had a lot more of a symptom i have had on and off before, which i know a lot of people with ME do get. It is like a shiver or a twitch when you are not cold. It is quite a big shiver and i have been getting it in the muscles of my shoulders and my whole upper body shakes spontaneously, particularly in the evenings when i am tired. On the up side, my muscular pain and tension has been a lot better in that area this week (since my holiday massage and such) and the shiver is painless and feels a bit like a releasing of tension, so i am not too bothered. Heat seems to help relieve it. I think it is a neurological/nerve type symptom. Maybe it is like mini electric shocks, as it does feel a bit like a TENS machine induced spasm, caused by or linked to my new extra excitable brain activity!?! I met a woman who had it very badly at a support group for ME and she would involuntarily suck in her breath when she had the shiver and it made a lot of noise due to that and was quite distracting during conversation… another unexplained ME oddity!

So it’s all good. Today i have slept more than usual and only done a bit of emailing and writing this, but have not felt too bad. These things, if i managed them at all (and certainly not in such quick succession) would take days or weeks to recover from a few months ago.

So why am i feeling a bit strange about all this? I really don’t know how to explain it…

Firstly i have a feeling that i am somehow cheating someone or something, that this is not my reality, my life, my lot. This feeling is quite worrying, but it is no wonder i just expect to feel awful all the time, i suppose, based on the last few years. It is a survival strategy not to expect anything to change. I think also i have to spend so much time explaining what i can’t do for benefits reasons and to people who share my life or new people i meet, that when things change it is as if i have been lying… hmm that sounds ridiculous doesn’t it? Change is always an adjustment…

Maybe i feel bad because i am getting Midodrine for my POTS (the very likely main reason for me feeling better) which is unavailable to everyone else and i know they may read this and it is always hard to read that other people are improving when you are not, usually i am the one who is not, but when will their turn come?

Also, I think it just feels a bit surreal to me, very unreal, and perhaps i cannot trust it to last or continue to improve… maybe i am coming around to that dangerous concept of Hope again! I cannot help but let my mind get carried away with itself; from dreaming of day trips and socialising, to doing courses, travelling places… and all the things that may become possible if things improve even more! (hmm better stop that!) I am already almost expecting August to be great… very dangerous territory…

It is mostly the euphoria i am feeling that feels strange. I am getting very high and excited (is better circulation to my brain allowing such feelings?) about quite simple things… most people do not get overly excited and “high” about a short wander to the beach, or a trip to the garden centre on a sunny day, do they? I wonder if it is just because it is so amazing to be able to go and even more amazing/unusual to feel good while doing these things, rather than just surviving them? If so, will the excitement fade if it becomes more everyday and normal to feel this good? (I hope not.) I am not getting any low mood as a come down, but i almost feel like i am on drugs at these times! Is it just my brain chemicals playing up? Was i depressed before but did not know it?

Anyway, I am trying to just take each day at a time, not to overdo it and rest up in between things. Importantly i must remember how bad i still feel regularly, how my life is set up based on me being barely able to look after myself/do much and if i reintroduced all the self care and household tasks that i do not do, i would not feel so positive; that what i am able to do is a big improvement for me but still very low level for most and I should not get carried away on the very odd but FUN tide of euphoria and just see what happens…

(but who can blame me?!!)

You look well!

(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…

Sunshine

Well, i have been really enjoying the sunshine recently! I am currently sitting on the doorstep with my jeans rolled up, my forearms out and my face and neck exposed also. I have decided to make sure that if it is a sunny day i will make sure that i sit outside in it for ten-fifteen minutes at least, in order to get my vitamin D for the day. I had a quick surf on the net and it seems this is all that is required.

I have not read into it fully but i am aware that there is research on ME and Vitamin D deficiency going on, so i think i may as well do what i can, just in case it helps! Also there is osteoporosis in my family, and i am a vegetarian so i may not get as much in my diet as other people, although i read that it is hard to get enough just through diet alone anyway.

Of course, i hope to sit out in the sun for longer than this over the summer but i may well cover up and wear suncream for any length of time much over this amount, especially in the height of summer, as i don’t think getting sunburn is fun or a good idea! It is good to know that something so simple can allow me to get enough vitamin D (assuming people with ME can make it the same as others do…). Knowing the climate i may have to seize the moment some days as you never know when the sun will go in in this country!!

Yesterday i definately got my quota, as after over two weeks of living in a cold virus ridden household (first my partner, then me) we both felt better and went out for easter sunday! It was warm and there was not a cloud in the sky. First we went for some lunch in town, but it felt so wrong to be inside, so we relocated to park, then a nearby pub garden and sat in the sun playing cards for a couple of hours! My back got quite sore from strange and unsupportive seating (despite having my cushion with me!) and i was exhausted when we got home but seem to have come off relatively unscathed after sleeping almost continuously until 1.30pm today! It was so nice to spend time together relaxing and to be out of the house and feeling good after some very tough weeks (before we got ill was very busy and i was not feeling well at all).

Hurray for the sunshine! AND after my mum came to visit and did lots of work in my garden (thanks mum!), and i planted some seeds, some are coming up today! I think it is the miniature marigolds… ahhh! Let’s hope the slugs and snails don’t fancy a snack before they get a chance of life. Fingers crossed for the californian poppies as well, then my garden will be a sea of orange flowers this summer

Great Weekend!

what is this? a positive post on my “illness” blog? wonders will never cease! brace yourselves – no moaning will follow!

On Wednesday i received a wheelchair from a hire company. I was expecting a visitor for a couple of nights so got it in time for that (but she has postponed her visit for another time), although i am keeping it for two weeks in total as my Mum is also visiting this Thursday for the weekend, so we can hopefully get out of the house a bit. I am working on a list of possible excursions so we can pick one when the time comes, according to wellness and weather.

On Friday my partner took me on a “walk” in the wheelchair, with the dog around some streets by our house for a test run. I held the dog lead and she pushed me. It worked pretty well, and the wheelchair is light and easy to manoeuvre (It is called Breezy Moonlight, in case you are interested, and is very comfortable). The only problem was that if i had to pull on the dog lead, it did affect the direction of the chair, but this was ok except when she was barking and pulling madly at another dog! I saw streets i have never been down before and we were out half an hour or so and the sun was even almost out… I was not feeling great however, particularly earlier in the day so was amazed…

…by what i managed on Saturday! I booked a shopmobility scooter for midday and got a taxi there, with my partner. I did not think i would be feeling well enough to stay out long but was just desperate for some fun!We went around two or three shops, and i bought some knickers (i have been desperately needing some new knickers for ages but have not been able to get to a shop for months, and although my partner can get some for me, i really wanted to chose my own! So i was very happy with that) and then we went to Fat Face, which i love, and i got some dark grey cords and a stripey zip-up jumper with a hood, and got a free t-shirt After all that excitement we had lunch at my favourite place in town, i had a plate of anti-pasti (sundried toms, mozzerella, beans, little mushrooms, grilled courgette and aubergine etc etc) and then a cup of thick hot chocolate that you have to eat with a spoon! Yum. By this time it was 3pm. I was starting to fade but me partner just had a couple of things to get so i decided to stay with her and go home together. We eventually returned the scooter at 4pm and got a taxi home.

I was on such a high that although i lay down a while i did not go to bed properly when i got home, and had a strange high in the evening where i was warbling on about rubbish and singing and was concerned that i may be annoying ( i was assured not, but i am still not sure!). I was so nice to feel so happy and to have been able to do so much after what seems like weeks and weeks of feeling bad almost continuously.

I slept well last night, and went back to bed late morning for my customary extra hour’s nap, but have not yet felt the “pay back”. In fact today has been good as well! I have been out for an hour in the wheelchair in the woods near my house (which i have not been able to set foot in for literally years) and we covered a lot of ground – it has hardly changed since i was last there though, which surprised me. It was nice to smell the woods, which had a hint of autumn about them and toadstools popping up all over.

Then i came back and made two little crumbles! I really miss cooking and feel a real sense of achievement. They also taste great! one is plum, and the other is apple and damson. They were actually very quick and low effort to make. (I don’t have to do my own washing up, so lucky!) I have a little headache brewing despite a quick afternoon nap but am fairly unscathed and just so pleased to have been so active and been out and about so much. My good energy has timed well with the the weather too as it has been dry and even a bit sunny.

So happy days! Just going to rest up as much as possible over the next three days until my Mum visits, and hopefully i can carry on this good trend…

The “Joys” of DLA Appeal and real sunshine JOY

Today was a day of such contrasts… i spent most of the day’s energy writing an email to my benefit’s adviser person about the DLA medical evidence they used to reject my claim, see below. No need to read it all but it gives a good idea of how much work/stress is involved in the Appeal, if i actually get that far…. and i got fairly stressed thinking about it all… on the other hand i have spent some lovely time in the back yard with my partner, the sky was so blue, it was so warm and sunny, i lay on my back and watched all different birds (starlings, gulls, pigeons, rooks, an unidentified possible bird of prey, swifts, a butterfly and some bees), several strange planes and a few familiar package holiday planes, a helium balloon (which floated about for ages from a tiny glinting speck to a large blob and from side to side), my plants were looking lovely and cobwebs shimmered in the heat. We played cards a bit and listened to some music and it made everything seem better.

So here follows the email, names edited…

…There are substantial differences between what the EMP had recorded about how i was/appeared and said to what actually was the case. I will briefly summarise these as it may be useful in justifying if we have a viable case. I will take  a note of obviously incorrect statements with me to Dr S too so that he will hopefully overrule them and assert that they are incorrect… no word from him as to an appointment date yet.
 
The report from my GP is not good, she has not even answered all the questions but maybe i should just wait and see if Dr S will be thorough and supportive, rather than go back for another couple of sentences from her? She has not even answered the question as to the severity, which the EMP describes as mild, which is ridiculous… I don’t know what to do about my doctor’s part.
 
OK:
Firstly, i did not get to answer all the questions fully as he did keep interrupting and moving on to new questions, so it is not a full picture, despite the meeting taking an hour, most time was taken up with repetition, him recording info on computer v slowly…
 
The summary in section 1, under Chronic Fatigue Syndrome J’s notes show that i talked about sensory overload as a main symptom (sensitivity to light, noise, movement in visual field). This affects me a lot and can affect my ability to sit in room with noise (TV/music) and often i have to lie in darkened room (i think i mentioned that to the EMP). Even when not severe this symptom can lead to me finding a taxi ride very draining and stressful, dealing with the momentum, radio, listening to chatty driver, etc and these symptoms do prevent me from going out and contribute to physical stress & fatigue/feeling unwell.
 
In medication i explained to him that i take Boots Tension headache tablets with codeine and muscle relaxant and at the time he said “paracetamol?” and i corrected him, saying that they did contain paracetamol but also codeine etc and he has recorded it as simply paracetamol… J’s notes also show here that i talked about my sharp nerve pains in my forehead that flare up sometimes, where i had Tri-geminal Neuralgia. he has not noted this anywhere.
 
on page 3 – client’s reported impairments and functional restrictions incl response to current treatment
J’s notes show that i stated that walking is VERY draining and that i need to lie down before and afterwards. He also asked me if i have good days and i said that they have greatly reduced as time has gone on, this is not in report.
He report states that “current treatment for CFS slightly improves the condition” I have no idea what this refers to as i am not receiving treatment. He asked me at one point if the painkillers i take work and i said to some extent, but this does not improve my functional abilities, I still have all the major symptoms/problems!
 
In the summary of typical day: again he had omitted that i have to spend a large proportion of the day in bed resting between tasks in order to get through the day without major flare up and effects in following days. He again asked me about my typical day but before i could answer he just asked lots more questions about my day rather than allowing me to explain. I became dizzy and very lightheaded while trying to answer these questions and asked for a pause at this point, as i was finding it hard to assert myself, be listened to, project my voice and felt quite weak and distressed. I explained that i do not get up, get washed, dressed, etc all at once and that i do the bare minimum (pj’s and teeth) before breakfast, then may deal with washing (bath etc) later if i feel well enough, which i often do not, or it takes a huge proportion of daily energy. After trying to explain about hair washing and being cut off within the first few words i started to cry, and although j’s notes do not show this i explained to him that i was finding it very hard to explain clearly as it was talking a huge amount of effort to speak and every time he interrupts is making it even harder as he did not seem to let me speak/listen to me. He did apologise but from this point on i was feeling very ill and was visibly shaking through the exertion/effort of being there. I also explained to him that my back was causing me a lot of discomfort /pain and i kept having to sit forward/shift position as the chair was not supportive.
 
(On page 5 it says that i sat still through 45 minutes… this is very incorrect.)

Still on p3 it says i can use a computer without difficulty – i did not say this, i said that i can use it for limited time, that i get blurred vision and limited concentration when reading, and that i can get sensory overload symptoms when using it. I also said here that i often just sit quietly, and am not always able to be doing something. None of this was recorded by EMP.
 
It also says i do not fall. I explained that i sink down to the ground, or have to sit/lie down on the ground but do not fall suddenly or in a way that could hurt me (a controlled fall)
 
Page 5:
hands not shaking (my body was so i think my hands probably were a bit as well – my legs were trembling through most of interview)
does not look tired – felt absolutely awful and cannot believe that i looked ok
 
mental state:
here is says i sat still – i was not sitting still at all – but this seems to be the mental assessment and my reasons were physical.
 
Spoke at normal rate/volume – i was having great difficulty speaking and getting through the questions. it was using a huge effort/amount of energy and making me lightheaded.
 
page 7:
no neck tenderness – very precursory feel about neck was done – i always have neck tenderness and can feel “grating” when i turn my head.
 
page 11: sat in upright chair for 45 mins without obvious discomfort  not only was i frequently changing sitting position, often leaning forward as no support for upper back on chair, i stated more than once that i was in discomfort. he asked me straight out if my back was painful during physical exam and i said yes.
 
walked 30 m very slowly to examination room. However this was inconsistent with other available evidence
balance observed as unsteady, However this was inconsistent with other available evidence
I felt very weak and was finding it very hard to walk, particularly by the end of the visit, where J was supporting me on one side and i had stick on other side as i left the examination room. I had refused to stand for physical exam as i felt unable and was feeling very weak and dizzy by this point. What other evidence?
 
I had no difficulty understanding the customer’s speech 
I had to repeat myself and correct him over and over again and still at the end when he summarised he had recorded things wrongly that had been repeated earlier. He misheard me several times due to my lack of ability to project my voice, j had to repeat things i had said for me.
 
page 12:
physical summary completely disagree with. My condition is not mild.
Medication does not improve level of function at all.
i have more than mild disability and there is not way i could cook and care for myself on a daily basis.
 
the degree of variability described by the client is unlikely  it took me a full week to recover back to any level i consider to be “normal” for me after that examination, which i found to be so stressful and drained me of all energy reserves. My level of functioning went down so that i was basically bed-bound for most of the day, managing only to get up to use the toilet and to sit downstairs for meals. I felt very ill and found it very hard to concentrate on anything, think straight, stand or move around the house. My whole body ached and felt very heavy and cumbersome. I have very sensitive points on my scalp and tension type muscular headache for several days. I was not able to bath etc as much as i would have like to, and the couple of times i had to take the dog out i almost crawled across the road, sat on the bench opposite while she did her stuff, then crossed back over and it was a major trauma. I felt very unsteady and dizzy.
 
How can i ever prove it though? If i have been asked to go to the medical in the days after i would not have been able to go AT ALL. If i had to do everything for myself just getting through most days would be overdoing it and would result in flare-up after flare-up. This is why i think i do meet the criteria. I have no control or say in having to go to appointments etc which make me overdo it in this way. Sometimes i have a flareups due to viruses, hormonal changes etc that again i have no control over. These flareups happen regularly and are part of the condition. even when not in this emergency situation i still cannot go out much or for long, have to plan any walking or to avoid it where possible, have quiet places to rest planned etc just to make normal things possible, which largely they are not.
 
Small rant there, but unless i say, how can it be used as evidence?
 
Page 13: discomfort, pain, breathlessness on walking: they say not enough to significantly restrict my mobility… my mobility IS significantly restricted If i want to go to the shop and i know i have to take the dog out i have to combine the two tasks, and it is a very short walk… how bad do i have to be? even that short walk is a struggle. Standing to pay for something in shop is very hard and if more than one person ahead in queue i have to leave and not get the item.
 
Does the client need to halt? If i stop and rest on a bench this helps a lot but if i stand still, it is worse than walking slowly due to symptoms of orthostatic intolerance. Often i sit on bench and feel so lifeless and heavy in limbs i really struggle to get up and get home. Saying no contradicts that i told them i do need to stop often when walking.
 
Page 15 – Risk of falls
i have already told them i am at risk of falls due to dizziness and that i do HAVE to sit/lie on occasion or feel so weak that i feel faint.
 
Attention needs:
Peel/chop – i would find this very difficult on bad days when feeling weak
hot pans -  same as above
i always sit if doing any kitchen prep and do find it very draining – i do it very rarely.
take bath/shower – i cannot shower as cannot stand well. I am not always able to have a bath when needed as major effort. always lie down afterwards.
 
page 17 – communicated without difficulty during examination – not true – i directly said i was finding it hard and was visibly distressed by effort and voice was quiet.
 
If i can get something supportive out of Dr S i will carry on, but i can see your point about the appeal without more medical evidence/support. How can i demonstrate how bad things can be? The more articulate i am the more people think i am ok, but i need to be because people do not seem to get it/listen/understand.
 
I am totally exhausted now but had to write this to give you something else to go on with welfare rights people… This is really stressing me. Tried to leave it and rest but could not stop thinking about it so maybe now that i have written this i can sleep a bit. trying to rest up for wednesday but not feeling too good now!
 
Is any of this inconsistency useful for our case? Please GOD!