A revelation in footsteps


Hey you guys! Long time no see! Things have been a little bit two steps forward, one step back for me lately but I’m choosing to focus on the positive and be happy about a whole heap of stuff.

First of all, the photo above was taken when I was out for a walk. Yep, a walk. That was a thing I was able to do a few times a week back at the start of March and it was AWESOME! I wish this illness operated with some kind of logic, but it generally doesn’t. Randomly, I found myself with a bit more energy than usual and I used it putting one foot in front of the other in pretty places at night and enjoyed the feeling of being able to move around more. It has been a really long time since I was able to do anything resembling exercise with any sort of regularity, so believe me when I say that going for walks was a total revelation. I’d missed it so much!

It’s hard to strike a balance between accepting things as they are, being content with what I have and still hoping for something miraculous to happen. Suddenly being able to do more, even for a short period of time, felt pretty damn miraculous. Partly due to that little boost in activity and partly (I think) due to the evil progesterone coil being removed, I’ve lost a few inches off just about every squishy part of my body and gained an inch of strong, fabulous, wonderful muscle on each thigh. I do love muscle and I want to have lots of it again. It’s great.

Then I got a weird stomach flu kind of thing that kind of knocked me for six. It’s difficult to have any energy at all when you can’t eat, but thankfully meals are now a thing I can consume again (yay!) and I’m slowly but surely recovering from the lurgy. It still surprises me how bloody long it takes to get over comparatively minor sicky things but I’m getting better at looking after myself and letting my body recover at its own pace. I’m still doing my yoga, which I am totally in love with (I can almost do the splits again, for real) and have even added in some strength building exercises with light weights. Hell yeah! I’m not quite able to manage the walks again, but I’m confident that I will be able to, even if it takes a while to get back there.

Rehearsals for the Beltane Fire Festival are going really well, which puts a smile on my face every time I think about it. My Tuesday evenings are spent at organiser meetings and my Saturday afternoons at group rehearsals with my merry band of Torchbearers, so it’s pretty full on and tiring to keep up with alongside work (literally no days off, at all), but it’s such a joyous experience.

My non-work non-Beltane time is mostly spent in horizontal mode out of necessity, cause I need to make sure I don’t wear myself out, but my body is coping really well with regular doing of stuff in small doses, so I’m feeling pretty good about it all right now. As always when things start to look up, I remind myself that it’s important not to over do it, but equally as important to embrace being able to do fun things and work a few extra hours while I can.

The only downside is that life seems to come with added painsomnia these days. 5am usually finds me doing bed-based yoga through tears and a bit of mild swearing, but work is all evenings and Sunday afternoons lately so at least I can manage to get through that on intermittent periods of sleep. I do find myself longing for a solid seven or eight hours though, and actually waking up feeling something like rested.

I know that compared to my past life before M.E. and compared to a fully healthy person, my level of activity right now is probably laughably low, but compared to the vast majority of my experience over the last nine years, it’s pretty impressive :-)

Someone at the M.E. Association said something accurate and wonderful about the PACE trial

I read this article, MEA chairman Neil Riley unpicks a central thread in the PACE Trial | 16 February 2014 ‘Recovered’ – do you only feel better?, on the M.E. Association website yesterday and, if I didn’t have the flu and hadn’t pretty much lost my voice, I would’ve been shouting “YES! EXACTLY!” very loudly. Instead, I just did that inside my head and decided to blog about the topic.

It’s so hard to know where to start because, honestly, I just get red flags left, right and centre over ‘treatments’ (yes, most of the time that I use that word in this post, it will be inside ‘these’) that are often applied to patients in the overly simplistic terms of “think differently and do more”. M.E. is not a psychiatric (psychological? psycho-something-else?) condition. It is not a caused by a fault in how people think. Obviously, your state of mind and how you are mentally and emotionally equipped and supported to handle a physical illness is hugely important and should never be ignored, but if a ‘treatment’ seems ridiculous for another physical illness (Just choose not to have cancer! Making emotional changes will cure your cystic fibrosis!), then chances are it’s equally as ridiculous for M.E.

Graded Exercise Therapy is a weird one. It is absolutely and utterly illogical to prescribe that as a ‘treatment’ for someone in the acute stages of M.E. because that is precisely when you need to NOT be doing things, NOT be pushing yourself, NOT be doing anything other than resting as much as possible. Prefacing this with “in some cases”, “for some people” and “where appropriate”, doing physical stuff and things can be ok, good even, if you are ABLE TO, and even then, it’s a huge and complex case of doing it within reason and moderately, gently, carefully etc with complete awareness of, and respect for, your own physical limitations. One of the main characteristics of M.E. is that doing tiring, exertiony stuff can seriously mess a person up. Clearly I’m not using medical terminology here, but you know what I mean. Activity should be carefully managed. M.E. patients should not be pushed beyond what they can physically cope with and recover from because it is DANGEROUS to do that. This is not a situation where pushing through the exhaustion and pain will result in you coming out the other side stronger and better. It just isn’t.

Also, this condition is one of remission and relapse. That means good (or at least less completely horrific) days/weeks/months interspersed with bloody awful ones. Sometimes relapse can be identified as the result of something specific, like an exhausting ordeal or an illness like the flu. Sometimes it just happens (and you bust your own head asking yourself why). It’s also a condition where recovery occurs for different people at different rates. Some people get better within a year or two, some people take longer, some never recover. That means that there are a million and one reasons why a person with M.E. might feel better today than they did yesterday or last month or last year, and it’s entirely possible that while some people might get better-better, plenty live in a constant state of up and down. This may coincide with an experience of ‘treatment’. It may not.

Talking from a personal perspective now, there’s a huge element of positivity, hope and determination in how I view my illness and my situation. Yeah, I get down sometimes. Horribly down. Angry, pissed off, miserable, frustrated, all that stuff. Cause who wouldn’t? But generally I look at my life as it is and I feel like “Yeah, it’s been worse than this and I’ve gotten through it, so I’m doing pretty well right now”. I tend to consider the good stuff, the stuff I AM able to do, over the bad stuff and the stuff I’m not able to do.

Like I have a job. I do volunteer work. I have a social life. I can do some moving around sometimes. I’m doing better in general than I was when I first became ill 9 years ago.

The other, equally as realistic and honest, view of that situation is that I can just about manage to work part time from home, which most of the time kind of allows me to afford to pay my rent and bills. I am involved in facilitating groups of volunteers for fire festivals for a couple of months twice a year, which involves leaving the house twice a week and working with supportive people who are aware of my condition. I see my friends cause they come and visit me and are sensitive to my limitations so are happy to have short close-to-home outings or just evenings at home for chats and tea. I can sometimes do yoga and go for short walks, but the rest of the time I have difficulty sitting or standing for any length of time, and there are many days when I can’t do anything at all. I’m in pain all the time, but I’ve gotten used to it so I can cope with it better.

This is all completely and utterly dependent on having at least 8 hours of uninterrupted, comfortable (i.e. in my own super-squishy bed) sleep a night, being able to go to bed when I’m tired, wake up naturally and get up when I’m able to. It’s also dependent on me being able to stop when I need to, rest when my body tells me to, eat a healthy balanced diet, keep stress to a minimum, avoid people with infectious illnesses and generally look after myself mindfully and carefully. This is not always possible or realistic, cause life.

When someone asks how I’m feeling, I tend to automatically focus on the emotional and on the positive, cause I’m generally pretty ‘up’ most of the time. I’ll talk about something that’s made me smile recently or felt like an achievement or been a good experience. I’m usually fine, or good, or great, or awesome. On a bad day, I’m feeling a bit rough, but I’m sure tomorrow will be better. No-one apart from my husband or very close friends ever witness me in full-on sick-as-all-hell mode, because I’m not in a fit state to go out or be around people when my symptoms are really bad. If the first thing you knew about me was to have met me on a bad day (or during a bad week or month), or to have read one of my venting-cause-I’m-sad-today posts on here, then asked how I was and I said “Great!” or “Much better, thanks”, you might be tempted to start throwing the word ‘recovery’ around.

But here’s the thing. I am not recovered. I am nowhere near my pre-illness state. I cannot do the vast majority of things I could do before I had M.E. My life is still severely and dramatically restricted and limited by this condition. I cannot get out of bed at 5am, go for a run or a cycle, get ready for work, commute, work at full day, maybe stop for grocery shopping on the way home, repeat four more times, then spend the weekend mountain biking, camping or dancing. I cannot work full time. A full week’s exercisey moving around stuff now is about the equivalent of one day’s gym-going pre-illness, if I can do it at all. It takes a looooong time to recover from a cold or flu.

I am better than I was. I have better days, weeks and months. I have fewer periods of being completely bed-bound or house-bound. But I am not recovered. Even when I say I’m feeling great today.

To quote the article linked at the top, “Here’s a suggestion, dear researchers. Why not go back and ask those patients if they can now do what they did before they were ill”.

A big massive hug for the soul

Fuzzy Monochrome

It felt like a good time to share a picture of me smiling after that last miserable post. Stuff with work hasn’t changed and money things are still uncertain, but this past weekend has been lovely and has brought some really joy into my heart again.

First of all, the evil Mirena coil was removed from my womb on Friday and my hormones are all my own again! As far as I know, it takes at least a couple of months for all that stuff to fully return to normal, but it feels pretty good to have started along that path. The actual removal wasn’t as bad as I was expecting, based on past experience. My doctor is amazing (which I have probably mentioned here a few thousand times before) and did everything super quickly with no anesthetic, so from start the finish the process was literally only a couple of minutes and didn’t hurt at all while it was happening. I felt a bit crampy and tender for a couple of days, but it wasn’t too awful.

The weekend itself was utterly exhausting but totally wonderful in so many ways. I’m facilitating a group of volunteers for the Beltane Fire Festival, and this weekend was when all the group organisers got together for our orientation. It was two full days of activity, both starting in the morning, which wiped me out but the vibe was so positive and I was reminded how incredible it is to work with such a diverse, creative and inspirational bunch of people. Seriously, it’s like a big massive hug for the soul.

I’m really grateful that I’m able to take part in the festival. The group I’m facilitating only meets once a week and there’s a group organiser meeting on another evening, so that’ll use up pretty much all of my out-of-the-house-doing-stuff ability for the next couple of months, but it makes me so happy to be part of something so full of awesomeness. There’s a massive effort made by everyone to be inclusive of people with limited mobility and other disabilities and conditions, so I can actually be completely open about what I can and can’t do, and there’s no judgment. In fact, there is so much support that it still surprises me!

I woke up this morning feeling like death on toast. I was aching all over and could hardly move. So far, in the last two hours, I’ve made it from the bedroom into the living room (with assistance from my husband) and had some coffee. I’m doing my best to work up the energy to have a shower before work, cause my brain is still all foggy and a shower usually helps to wake me up. It’ll probably take a few days to get over the exertion of the weekend, but I’m happier than I’ve been in ages, so it’s all good :)

Work, fear and financial uncertainty

I’m feeling a wee bit stressed at the moment because stuff has changed with work and I will now be getting paid less and have fewer shifts available to book, shuffling my financial situation down a couple of rungs from precarious to potentially desperate. I’m pretty sure it’s not ok to go into detail about work-related stuff on a public blog, so I’ll leave it here on the subject by saying that I’m feeling pretty screwed over right now, as are lots of other people, apparently.

That news (received on Thursday, just before I started my shift) and its knock-on effect set off a pretty icky chain of events over the last few days. I was actually fine initially, which surprised me. Then at 2am, everything sunk in and I got really, really scared. Which is perfectly natural when you’re pretty sure you can pay your rent this month and next month, but after that, who knows? And when you’ve been trying to find a different job because you have no safety net and need a regular and reliable income income, but need flexibility for booking work every week because your body doesn’t function consistently and also you can’t work mornings and have to work from home because you’re not able to leave the house more than a couple of times a week and can’t work for more than a few hours at a time unless you get recovery days in between, and sometimes not even then, and there just aren’t any other jobs like that happening at the moment (believe me, I have hunted high and low).

Staying in a job where you’re not only not valued at all, but are actually…whatever the word is when you’re actively un-valued and an ongoing basis, isn’t great for promoting feelings of self-worth. I keep telling myself that it could be worse, that I could have no job at all. I totally accept this. At least I HAVE a job, even if it may not enable me to afford a roof over my head in a few months time. But right now, I have a job and can pay my rent, so the part of me that feels guilty for being ungrateful is glaring disapprovingly at the part of me that is utterly terrified and frustrated and wishes that things could be different, that I could just be not sick and be able to get ANY other job. I have something else in the works at the moment (which I’m not talking about until it happens), but it’ll most likely be a slow grower and definitely won’t provide a regular, reliable income any time soon, especially when it’s being funded completely from my income from my current job, my only source of income, which will be getting smaller very soon. But still, I’m trying to move forward and explore other options as best I can.

Aaanyway. I managed to get to sleep for a couple of hours on Thursday night (technically Friday morning), then woke up to what would be the start of The Epic 12 Hour Panic Attack. It was pretty horrific. Like “I don’t want to talk about it now cause I can’t cope with reliving it” kind of horrific. Panic attacks of that magnitude are totally exhausting. Afterwards, my body and brain JUST CAN’T. Normal stuff like eating, talking to people, thinking…all that stuff is wildly difficult, especially when you’re operating on a couple of hours sleep and have an illness that requires you to sleep a lot to be able to function. Urgh. I was over the worst of it by late afternoon, then started work at 5pm.

I was working again the following morning, again after nowhere near enough sleep. Mornings are a nightmare for me, especially when I only finish work at 9pm the night before, but not having as many shifts available means having to work Saturday mornings the last couple of weeks. Cue The Evil Vomit Migraine. Once I finished work, I spent the rest of the day in a dark, quiet room, unable to sit up for more than a couple of minutes at a time. But, on the upside, I finally got to sleep properly on Saturday night, which was awesome!

Yesterday, I managed to go out and get a bit of food shopping for this week. For a few days after a major panic attack, I feel kind of dislocated and find it really difficult to be out and about in the world. It’s feels like how a bad acid trip looks in movies. As far as I’m aware though, I do appear normal (or as normal as I ever appear) to the average onlooker, so it’s not like I was staggering around crying in Asda or anything.

I slept a bit more normally last night and even though I’m still feeling wiped out and kind of spacey today, it’s definitely better than yesterday. I am SO glad this doesn’t happen too often cause it’s pretty horrible having to deal with it on top of all the physical stuff. I’m currently working through a hefty dose of fear and uncertainty, trying to figure out how to accept that as a part of my life for the foreseeable future, recognise it as an experience, seek out opportunities for change and focus on the more positive things than are happening at the moment.

Deep breaths.

Uterus progress and busy days

moment of calm

First of all, some good news! After my post at the end of last week, I went to see my lovely doctor and I am having my Mirena IUD removed on 14th February! The downside to this is that the only action I’ll be getting on Valentine’s Day will be from a speculum, but oh my goodness, I cannot wait to get that horrible thing out of my body and have hormones that are all my own again.

It has been a busy few days though. I did a bit of grocery shopping after my appointment with the doctor on Friday, then had work that evening. I was also working on Saturday morning, which was a bit of a nightmare cause my work day usually ends at 9pm, so having a random morning thrown into my routine messes me up hardcore. It’s necessary at the moment though, cause there are limited shifts available (no afternoons) and I can’t afford to work fewer hours than I already do. I am SO glad I work from home! I would literally not be able to do random mornings if I had to actually go into the office.

On Sunday afternoon I went with my husband to a house re-warming party. One of his clients had recently done a lot of work to their house so had a little gathering to celebrate it being finished. I had to use my walking stick cause I’ve done something icky to my knee (am I the only person in the world who can hurt themselves doing yoga? Don’t laugh!), but it was just a short outing and we drove home past the beach and stopped for a moment of calm (see photo above).

By the time we got home I was feeling pretty worn out and the left side of my face and neck were swollen and sore. I had an early night and a long sleep, but when I woke up this morning I was feeling properly achey all over and like my head was stuffed with cotton wool. Cotton wool soaked in pain. I can never tell, initially, when I feel like this if it’s regular old M.E.-related worn-myself-out kind of stuff, or if I’m actually coming down with something. Cold and flu things always manage to sneak up on me cause I feel like I have the flu pretty much all the time anyway, so when I actually have it, it comes as a bit of a surprise.

My world currently smells of wintergreen rub (AMAZING for achey muscles!) and I’m snuggled up in my onesie, with a super-soft scarf wrapped around my neck right up to my ears to keep cosy. I’ve taken some devil’s claw (awesome anti-inflammatory, which I rave about all the time, in case you hadn’t noticed) and am comforting myself with tasty cups of chai. I’m working every evening and Saturday morning this week, so at least I don’t have any full days or work to cope with and I can focus on relaxing during the day and sleeping a lot, if I need to.

Yoga (which I have actually been doing EVERY day since I started last Monday…go me!) is being reduced to maybe 5 or 10 minutes a day until I feel a bit more stable again, but it feels so worth at least trying to keep up with a little bit even when I’m feeling rotten because its been great for quieting my hyper little mind.

I’ve added a few more links to my list of Other Chronic Illness Blogs in the side bar, so if you’re looking for more stuff to read, go read those!

A Mirena IUD and a possible revelation

Back in December I had my three-yearly cervical smear. I got the results a couple of weeks ago and apparently there are ‘minor changes’, which means that I need another test in about 6 months and should let my doctor know if I have any unusual symptoms, like bleeding between periods. So far, no major panic. I figured I should make an appointment with my doctor about the random bleeding I’d been experiencing recently and get it checked out. None of this was terrifying.

Then I saw the NHS Leaflet of Fear and Judgment that accompanied the pleasant non-frightening letter from my GP. The first page of the leaflet is basically WOO HOO! SEXUALLY TRANSMITTED FILTH AND CANCER! to the point where you don’t even really take in anything else after that. But they have pictures of ladies in white t-shirts pretending to have conversations with each other, so that’s nice. Or something.

It’s probably worth mentioning at this point, in case you’re not a regular reader and aren’t aware of this aspect of my existence, that I am utterly terrified of having to deal with medical professionals. My own doctor is absolutely lovely. She’s been my GP for a few years, she knows stuff about M.E. and she treats me like an adult with a functioning brain. Prior to her, I have had SO many horrendous experiences with doctors, especially related to M.E. and contraceptive stuff and things, and every time I see a doctor who is not my own GP, I get this sinking feeling that they will talk down to me, not take anything I say seriously, treat me like I’m delusional and make ridiculous negative assumptions about my lifestyle based on my appearance. Because that is what has actually happened a lot of times. Even though rationally I know that I will not have this experience with my own doctor, I still get the fear.

I’ve also experienced quite a bit of “Don’t be silly dear, nothing’s wrong” only for there to actually be something pretty major wrong. This includes, but is not limited to, the time when “You’re just stressed about your exams” was actually glandular fever, followed by post-viral exhaustion which took 6 months to recover from. And the time when “Well, your leg probably isn’t broken” wasn’t accurate, in that my leg actually was broken. And the time when “Just take some painkillers and go back to work” ended up being M.E. which I’ve now had for 9 years.

It took two weeks to get an appointment with my own doctor because it had to be on an afternoon rather than a morning, and at a time when I was already off work, as I can’t afford to take time off at the moment. I work until 9pm and a random comparatively early morning where I have to go somewhere and do something would require a couple of days off afterwards to recover from and get back to my normal(ish) routine. So I’ve had two weeks to go through the cycle of denial-obsession-terror-logic a number of times. I’ve been from “Everything’s fine” to “I can’t stop thinking about this” to “What if this is the start of something truly awful?” to “Be sensible, it’s probably going to be alright” so many times I’ve lost count.

I was aware that the whole bleeding between periods thing can be caused by the Mirena IUD that I have. Prior to it, I’d been on the pill (which I had to stop taking because of the type of migraines I get), the mini-pill (which made me put on loads of weight, cry all the time, eat nothing but cheesecake and suddenly get acne after never having a spot in my life) and then the copper coil (which resulted in such heavy bleeding that I did nothing but sleep, puke and change tampons every half hour for a week and a half each month). When the Mirena was suggested as an option a few years ago, I did some research and noticed that there were some potential side effects, but since I had basically run out of other options for contraception at this point, I went for it.

My husband and I are childfree (neither of us have ever wanted children) and seeing how much horror I’d been through with contraception, he had attempted to have a vasectomy a number of times in the past, but since everyone MUST HAVE THE BABIES according to the NHS, he wasn’t afforded agency over his own body to make this decision. One doctor even said to him, in front of me, “What if your wife died and you married someone else who did want children?”. She just looked confused when he reiterated that HE didn’t want children, not seeming to grasp that he, as an individual, was making a choice. This is a whole other issue that I’m not even getting into here but suffice to say there is SO much wrong with that entire system.

Everything seemed fine(ish) with the first Mirena I had. My periods stopped after a few months and I didn’t notice anything particularly awful going on. It came to the end of it’s life, so I had it replaced with another one a couple of years ago. A few weeks later, I suddenly started having violent cramps and bleeding A LOT. It was Christmas time so I called NHS 24 to ask for advice about what to do while I waited for the family planning clinic to reopen after the festival season. The response was “Go to hospital. NOW”. My IUD had shifted around a bit inside me so after an uncomfortable night in hospital, it got replaced with yet another one.

My periods came back. I also started bleeding for a day or two at a time, at completely random times, although it was hard to tell when I was actually meant to be bleeding because my cycle was so irregular that it could barely be called a cycle. I had vicious PMS symptoms, including aching breasts, violent cramps in my back and abdomen, shooting pains in what felt like my womb (it can be hard to discern the source of internal pain like that) and mood swings like you wouldn’t believe. I told myself that this was no big deal because hey, loads of women get PMS and because I could identify what it was and it wasn’t killing me, I could deal with it. My migraines also got worse and more frequent, but I didn’t even register this as an issue because although it wasn’t normal for them to be so bad and happen so often, I have experienced migraines to some extent with varying frequency for most of my life.

I realised that I hadn’t actually looked for any information about the Mirena since before I had the first one installed (or whatever the word is for having plastic and hormones shoved into your uterus), so I did a bit of pre-doctor-visit info-hunting. HOLY CRAP. I have read literally hundreds of stories from other women over the last couple of weeks about side effects including…

  • Bleeding between periods
  • Back pain
  • Abdominal and pelvic pain
  • Fatigue
  • Migraines
  • Depression and mood swings
  • Acne
  • Pain during and after sex
  • Weight gain and not being able to lose weight
  • Ovarian cysts

I don’t know if I missed all this stuff the first time I looked into the Mirena, or if I saw it and figured “Whatever, I don’t have any options left”, but suddenly things started to fit together in my mind. I have no idea if I have ovarian cysts. I hope I don’t! But everything else, ALL of those other things, fit with my experience perfectly. To be fair, I already had migraines (although they have been worse over the last year or so), and the back pain, fatigue and even mood disturbance is pretty much part and parcel of having M.E., but it suddenly hit me – what if that stuff might be less severe if I didn’t have the Mirena?

I feel kind of stupid for having never connected all those dots before. Obviously I’ve seen my doctor for M.E.-related stuff and other things, as well as various other docs in the context of contraception and gyne-things, plenty of times in the last few years and have talked about all those symptoms at one time or other, although probably not all at once. When mentioned in isolation, they’re just possible side effects of pretty much any form of contraception, or just part of having M.E. or a fluctuation in something I was already experiencing.

I think my doctor actually does IUD removals from the GP surgery, which is awesome because the family planning clinic is in the centre of town and I can’t afford to take the time I’d need off work to go there and then recover afterwards. I’m going to ask my doctor how soon I can have the Mirena removed and I am getting that damn thing out of my body. Maybe nothing will change but what if it does?  What if my cycle gets more regular and my back hurts less and I am less exhausted all the time and the PMS is less severe and my migraines become less frequent and my skin goes back to normal and I can lose weight? I’m not exaggerating here – that would literally change my life, in a really big way.

I know this has been a really long post. I wrote it mostly because I needed to get this stuff out of my head. I spent most of yesterday trying to subdue the panic attacks that happen before going to the doctor and trying not to let cancer-fear take root in my brain. I didn’t sleep much last night and have been awake for hours, nursing low-level anxiety. I’m going to do my yoga, have a shower then go and DO THIS THING.

Challenging myself to accept myself

[Read this lyrics to this beautiful song here]

For the sake of my mental wellbeing, I’ve been working to challenge some of my internalised issues around what I can and can’t do and how this reflects on me as a person. For example, when I sleep for 10 hours, wake up in the late morning and then have a day which involves nothing but work, rest and a bit of other minor gentle inside activity, I have this tendency to view it as “I slept for so long, then I woke up late, then I hardly did anything all day apart from work” and I end up feeling like I haven’t been productive or really achieved anything, which bothers me.

My challenge to that perception is to think “I slept for as long as I needed to then I woke up when my body was ready. I rested as much as was required to manage my symptoms and took care of myself so that I could do my job to the best of my ability. Even though I wasn’t able to go out anywhere today, I spent time catching up with friends online, writing in my blog, taking pictures to share as part of my 100 Happy Days project, and enjoyed hanging out with my husband in our lovely little home”.

My default setting is do all the things! and I have always felt a burning desire to be productive and in a constant state of progress and achievement. Weirdly, this has very little to do with how other people may view or judge me and pretty much everything to do with how I view and judge myself. And yes, I know it’s kind of ridiculous and very out of place in my current situation as a person who really can’t do all the things as much as I might want to.

Back at the start of 2012 when I had to give up running my business, the one thing above all others that I needed for emotional stability was to feel like I was contributing to something and doing something worthwhile. So I spent the next couple of years as a year-round volunteer for a local arts performance charity, with a year on the Board of Directors as Company Secretary. I set up and managed the charity’s social media and online presence and even though it didn’t involve physical activity, it did get pretty full-on and exhausting at times. I didn’t realise until I stopped doing it a couple of months ago just how much time, energy and headspace it was taking up. My volunteering is now limited to taking part in festivals twice a year, which allows me to work within a defined timescale for which I can plan realistically. And it feels SO GOOD. Needs change and situations change, so I took that opportunity to remind myself that what felt right two years ago doesn’t feel right now, and that’s ok.

I did go through a period of my internal monologue consisting of “You’re useless for not being able to keep doing all those things!” and it took a lot of effort to turn that around into “You dedicated pretty much all your spare time for two years of your life to doing something useful and productive as a volunteer in one context, and now it’s time to rest, evaluate and embrace different goals”.

In this moment, it feels right to turn my focus inwards a bit more. Looking back at all the posts on this blog, I can retrospectively see a process taking place. It has felt like mourning, grieving, a bit of anger, some denial, feeling out of place and kind of lost, but it has been headed towards genuine acceptance. I have accepted that there is a mystery in my future. I might have M.E. for the rest of my life. I might not. Some awesome scientists might come up with a cure. Or they might not. Whatever happens, there are likely to be periods of remission and relapse. This is not my doing and it is not my fault. It simply is what it is.

What I can do in the meantime is accept myself, take care of myself, work through negative feelings and difficult times, embrace challenges and do my best to cherish the good times and good things and good people. I have said similar things before, often, but lately I feel like something has changed.  I feel like now, I really deep-down honest-to-goodness mean it.

This doesn’t meant that I won’t ever feel sad or angry or ranty or ragey again or that I won’t ever post sad, angry, ranty, ragey stuff here because, as I’ve said before, I feel that it’s healthy to embrace and express a full range of human emotions. But it does mean that I have made progress. Maybe it’s not progress that anyone else will see or notice or be aware of. But that doesn’t matter. Not one bit.