Degrees of Acceptance

Acceptance it seems, is not a solid, permanent, all-inclusive state. In fact it comes and goes, and it comes in varying degrees. I accept that I am ill. I accept that my life must be moulded accordingly. But there are parts that I have not yet mastered, despite convincing myself that I had reached this incredibly important but incredibly rare state that we with chronic illnesses must reach. We must accept our illness. And I had. To a degree. But I am learning that it is not accurate to use this term ‘Acceptance’ as a blanket term.

I don’t mean this in terms of accepting help or support. I mean it more on a personal level. I mean it in terms of not being in denial about the reality I am faced with.

I think 2019 is turning out to be the year of bravery.

This is a perhaps a strange one but recently, two years into having my Support Worker’s help, I asked for her to take me to the supermarket. We’ve done that before; she’s driven me to the smallest and nearest supermarket and I’ve shuffled in for milk or something similar. I’ve also sent her to the supermarket for me, with a shopping list and the means to pay for what I need. But in two years, we have never done a shop together. So this was a big deal; asking her not to wait in the car as she has done before, but to come in with me. To properly help me, in the ways I truly need.

I don’t know why it’s taken so long to admit I need more help than I’m asking her for in some areas. She does the laundry for me, the washing up, the hoovering, makes phone calls for me, prepares meals… But this has always felt different.

I was ashamed. I think I was ashamed to admit that I struggle with the cognitive side of things far more than I was letting on. Slightly odd really, as the very reason she is employed is to help me with such tasks.

On some level it felt pathetic actually. To be a 30 year old woman unable to do such a menial every day task as buy things from the supermarket. But then I reminded myself that all of the things my support worker helps with are basic menial tasks that the average 30 year old can do without even thinking about them haha! So why was this so different.

I struggle cognitively with quantities, budgeting, whether I have the correct money in my hand, and I get easily overwhelmed, particularly at the check out. My husband always packs the bags for us and acts as a kind of wellbeing coach when he can tell I’m suddenly feeling very panicked and overwhelmed.

The day I asked my Support Worker for this help, I had been feeling a bit stressed because I had a coupon and I was worried I hadn’t read it properly. Was worried I wouldn’t meet the criteria needed to use it. This has happened quite often before. My husband and I have got to the checkout only to find I hadn’t interpreted an offer or a voucher correctly. I just needed a hand. An extra pair of legs to go back down an aisle if I’d missed something off my list. Someone to pack. Someone to work out which things came under a certain offer. Someone to double check for me when I can’t quite trust myself. And something clicked inside me that made me feel brave enough to ask for this help.

As always, my Support Worker didn’t bag an eyelid at having to help a grown woman with something that the majority of people do without even thinking about it. And off we went together to slowly get what was needed from the supermarket.

I am immensely proud of myself and very, very brave. And I hope this new level of Acceptance sticks around. I need this help. I am unwell. And that’s all perfectly okay.

Useful

I went into ‘work’ last week. I walked through the grounds, past the nursery I used to drop the children at when I was a part-time nanny, and into the holiday camp that has been a constant in my life since the age of four.

For the first few years after 2010 it was far too upsetting to visit. Devastating even. When I lived at home with my parents the constant stream of bookings and phone calls and then masses of paperwork to be done before the start of each camp was a constant reminder that I can’t do any of it anymore. None of it. I was once given some laminating to do to allow me to be involved in some way. It took me over six months to laminate thirty pieces of paper, which is not great when paperwork needs to be done quickly for a new camp starting each week of the summer.

But last week I went. On my own (although that wasn’t quite the plan). A friend was working there and wanted to call in to say hello. I was nervous. Actually I was terrified. The staff don’t know me now. They’d have no idea who I was and I feared that turn me away at the door. ‘Stranger Danger’ you see. But the manager had been told I’d be arriving. I wore my old sweatshirt, perhaps of proof that I do belong there in some small way.

I’m able to enjoy the anonymity more than ever before; to them I am just another Jones, not “the one who’s poorly.” I felt no urge to tell them how I did their job way before they did. I felt no desire to prove that I know all that I know about it all.

I felt out of place. I don’t know the layout of the site anymore. So much time has passed and so much has changed. But in the hour I was there, someone noticed that they were out of eggs for the next baking session. And so I volunteered to go and get some.

I don’t want to go into the hows and whys and consequences of running such an errand. It’s becoming tiresome to feel I need to prove myself and justify everything to be deemed worthy of this wretched ‘Chronically Ill’ title. In this instance, you can think what you like. I’m realising that it says more about you than it does about the validity of my illness.

I did it. And my goodness I was ELATED. I did something that no-one else could do at that particular time. I was USEFUL. And I’ve been riding on that wave of euphoria ever since.

Two years of ‘PA Days’

Related blog posts

https://the-slow-lane.com/2017/03/15/worthy-of-help/

https://the-slow-lane.com/2018/07/31/one-year-on-pa-days/

Hello I’m Anna and I rely on help from Adult Social Care.

When I left the care of my parents and moved in with Mr Tree Surgeon, six years into my M.E. journey, a dream came true. I had flown the nest, but that momentous story is for another day.

Despite this incredible ‘against-the-odds’ milestone, I was not able to live an independent life. Both of our mums were relied upon to help me run a home and take the pressure off Mr Tree Surgeon who runs his own business and works a ridiculously physical job. It didn’t do much for my self-worth and the sense of guilt was huge. Help was ever-so gratefully received, but it came on an ad-hoc basis and often when things had gone too far and piled too high.

In October 2016 I called my local Adult Social Care team, on the verge of tears, desperate for a proper, permanent solution. I didn’t want much! And I didn’t think I needed personal care as such. Just a ‘Girl Friday’ to be an extension of myself. Now in August 2019, I’ve had a ‘Personal Assistant’ or Support Worker as we prefer to call it, for two years. The difference it has made to my health and my life is incredible.

The relationship is worlds apart from having a friend or relative come to help. It is a business transaction. My Support Worker is paid to come and help me, at regular times and on specific days. For me, this help is fully funded by my local council. I have been lucky enough to have the same employee throughout. A local charity handles my Direct Payment for me, paying wages, sorting National Insurance and Pension contributions and generally having my back as I navigate life as an Employer. I couldn’t do it without them; my cognitive function cannot be trusted with such important things.

I am well enough to write this today, all in one go, because my Support Worker has been to do the household tasks that I either cannot possibly do, or that I cannot possibly do without it having a negative impact on my physical health. Washing is drying on the line, the dishwasher has been emptied, beds have been changed, cheques have been paid in at the bank, floors have been hoovered…

I have a tiny bit more of a life because of this invaluable help.

The emotional impact of long-term physical illness

As published on the ME Association website on 8th July 2019. To read the article on their website, click on this link https://www.meassociation.org.uk/2019/07/the-emotional-impact-of-a-long-term-physical-illness-by-anna-redshaw-08-july-2019/?fbclid=IwAR1mQ9Js_NEnkmWQWH_o4vXGGpNgc18Nynb75tRsqcNb4zhHzYk7rBo-wTA

I have no diagnosed mental health conditions, but in the same way that we all have a physical health, every single one of us has a mental health. Recently mine hasn’t been as good as it once was. To put it simply, I have been unwell every single day since September 2010 and no human being can endure what we endure as M.E. sufferers and come away unscathed.

I have experienced incredible ignorance, disbelief, battled with the DWP, and missed out on a lot of life since being ill, but it was the realisation that motherhood would not be something I would experience that ended up being the straw that broke the camel’s back. Due to the severity of my M.E. and the all-encompassing effects that my health has on my life, I will not be having children. (It is not something I am wishing to discuss or justify at this time.)

Having reached this devastating conclusion some time ago, I steeled myself for the day my siblings or cousins made a pregnancy announcement. But I still wasn’t quite ready for it. I will be an aunty for the first time later this month.

With every friend that announced that they were having a baby, there was a huge internal conflict. I was overjoyed for them, but heartbroken for myself. Every birth announcement left me torn between elation and despair. These feelings were amplified when my sister announced her pregnancy late last year. I have missed out on a lot since being ill but this sacrifice seemed too cruel a thing to endure.

I have never viewed seeking help for one’s mental health as something to be ashamed of, but I also genuinely never saw myself needing such help. For nearly nine years I have been okay. More than okay. Happy. Content. Grateful. But it seems you can be all those things and still be sad, angry, frustrated and lost. And feel this searing pain and despair over what I feel is an ultimate loss; not becoming a mother.

The conflicting emotions became overwhelming. I sought help. It took over six months to find the courage to send that first email to my counsellor. The breaking point came one evening after speaking to my pregnant sister. It was clearly deeply unhealthy to come away from each phone call and cry inconsolably.

When I started to look for a local counsellor online, I became incredibly angry and frustrated to see CFS/ME listed amongst the issues that a counsellor claimed they could offer support with. I despised the implication that my very physical health condition was something that talking therapy could help. When my appointment came around, I endeavoured to mention my physical health condition as little as possible and just concentrate on The Baby Thing.

I can’t tell you how hard it was to go to that first appointment; to put myself out there when I am so incredibly vulnerable and not nearly as thick-skinned as M.E. sufferers need to be. To put myself in a situation where another’s views on M.E. could have done such damage to me was a huge risk. But I was desperate. Perhaps the fact that I went highlights how much of a struggle missing out of this milestone has been.

Ever the optimist I though 6-8 sessions, as initially recommended, would be enough. But now, 4 months on, I realise it is more of an ongoing commitment. It’s opened a can of worms. It’s not that I kept everything in, or hidden away, or bottled up. I have had an incredible support system to lean on. It’s that now I have someone to offload to who has no emotional response to my struggles, and over 8 years of tales to tell. While it was The Baby Thing that led to me seeking help, it is the overall subject of long-term illness that has been the main topic of discussion. Afterall, it is M.E. and only M.E. that is the reason behind my husband and I facing a childless future. A condition like M.E. has an incredibly far-reaching effect on the sufferer and those in the sufferer’s life.

While too many medical professionals have inaccurate and outdated views about M.E. being psychological, my person-centred counsellor is in no way trying to cure or help me recover from M.E. She is simply supporting me through the emotional impact that M.E. has had. There is a difference.

I think it’s important to note that it is a privilege to be able to seek this help, from both a financial and a health point of view. Just a couple of years ago I would have been too unwell to even contemplate starting this process. Every cloud eh…

Family and friends have offered me support when I have shared my struggles, but there’s something very powerful about getting sympathy and understanding from a health professional. I think that’s something all M.E. sufferers can relate to.

To have coped in any kind of way with the reality of M.E. is commendable. Kicking, screaming, crying, full of hope and optimism, at peace…all responses are valid. I have done them all. It seems I just needed to hear from someone further removed than my own support network, that it is perfectly okay to be feeling the way I am feeling, particularly around the subject of parenthood.

I can’t stress enough how valuable the experience has been for me so far. It really is good to talk.

Better in time?

Even if it doesn’t quite heal the pain, time definitely seems to lessens it.

Summer camp starts this week. Our family run holiday camps. For me, it marks my 8th season of not being a part of it. For the first few years I struggled emotionally with missing out on an experience I had been a part of since I was just four years old. I found it hard to even listen to my family discussing the holiday camps infront of me. If I was well enough to visit, I was still hesitant too because it hurt so much to see what I was no longer a part of. Now though, that pain has subsided.

When that neurologist told me in November 2010 to have a quiet Christmas and see how I was in the New Year, my mum and I scoffed a little at being fobbed off, but I’m not sure any of us imagined it’d all still be going on almost nine years later.

That last Summer in 2010 turned out to be the very best I’d ever had. That makes me feel very lucky.

Being replaced, within the family business, in a role I felt was truly mine hurt more than any other part of my new M.E. life, but that feeling has certainly decreased over time.

That role doesn’t fit my life anymore. I’m so far removed from that version of Anna now that I simply can’t imagine fulfilling those roles within the family business right now. It’s a sad realisation but it’s a matter-of-fact one rather than a pessimistic one.

It’s an odd thing to sit and think about. And if I’m not careful I’m sure I could fixate on the things that are lacking from my life. But the truth is that I can’t be sure I’d still be involved in the family business in the way I was back then anyway. I may well have got a job that didn’t allow me to be fully immersed in the holiday camps as I was when I was a university student/graduate. None of the people who worked at the camps when I did are still working there. People move on. But it wasn’t their family business…

The difference in my physical abilities is startling. I used to join the boys in rolling up the bouncy castles and inflatable quad bike circuit in all weathers.

It was always assumed that I would take over the business with my siblings eventually. I am aware that it’s now incredibly unlikely but who knows what the future will hold.

With the new season of Summer camp starting, it means that my M.E. anniversary is edging nearer. I am certain that M.E. will be a part of my life forever now. Again that’s not pessimism talking, it’s just a realistic approach and the level of acceptance that I’ve reached. All I hope is that the severity lessens, as quickly as the pain did over no longer being a part of the family business that I loved and lived for.

Savouring it

I apologise in advance if this seems self-indulgent. Perhaps I’m only writing it for myself anyway.

It is never me who empties these tea party boxes. I never lay the tea sets on the tables, never hang the decorations or balloons. Never walk down the village hall driveway to put out posters directing people in. Never boil the kettles or pass out the teaspoons. I never collect the dirty cups or do the washing up. I never pack everything away, carefully wrapped in bubble wrap. On the day of the tea party I can often feel a little frustrated. I can’t even be sure to chat to each guest myself. My health simply doesn’t allow it. I’m not well enough for that.

The frustration and the guilt that so many of my extended family are doing so much to make the day a success can make me feel quite rubbish.

So sometimes I forget what it is I have started.

And so it has really hit me hard to see everything Blue Sunday related strewn around me as I rest on the floor. 8 years ago there was no tea party for M.E. I started it. Me. And look at how big it has become.

It wasn’t even meant to become a ‘thing’. I just knew I wanted to do something that M.E. sufferers themselves could join in with. I had met people online whose lives had truly been decimated by this illness. They needed bringing to people’s attention. I wanted to raise money for support and biomedical research but my goodness did I want to raise more accurate awareness. Just a few family members and friends coming over for tea to actually mark the fact that M.E. was a condition worth marking.

As I sit surrounded by the tea party boxes filled to the brim with tea spoons, napkins, teapots, sugar bowls, cups and saucers, cake knives it dawns on me that I did this. I started this.

Every year over 70 people turn up to mark ME Awareness week with me and my family. 70 people who may otherwise be completely unaware of the reality of M.E.

There are leaflets with information on that you won’t find in a doctors surgery. There are photos of those joining in online because they are too ill to leave their homes and join me at the real life event. There are snippets of the uneducated things that have been said to M.E. patients.

It’s the bunting that makes me stop and think. It was that 23 old girl who sat in her attic bedroom with a paper cutter and a laminator painstakingly cutting and stringing paper bunting. The energy that would have taken… the punishment her body would have given her for doing that.

And then there’s the fabric bunting, made by that same girl who taught herself how to use a sewing machine when all else in life, all of the hobbies she’d had, felt beyond her reach. When she could hardly walk but wanted to try to see what she could still manage to do. The strength of that girl…

There are piles and piles of that handmade bunting. Made for this tea party idea I had because it seemed wrong to me that there was nothing I had come across that marked International ME Awareness week. Surely we deserved something.

Too often over the course of my journey with this illness I have felt utterly pathetic. Heartbreakingly pathetic. My achievements are so far from those of my peers. I still cannot shower each day, especially without it making me feel unwell afterwards. In a life knocked completely off course, Blue Sunday gave me something back. It has become my ‘thing’. If the rest of the year is trampled over by medical appointments and benefit assessments at least I will have that one wonderful, momentous day in May. It’s small fry really but it’s my greatest achievement.

Chronic illness has dramatically and devastatingly altered my sense of identity and self worth. Blue Sunday has helped so much.

Next years tea party will be Sunday 17th May 2020 in Stamford, Lincolnshire. If you’re able to make the journey you’d be very welcome.

The tea party for M.E. – Blue Sunday 2019

Go Blue for ME 2019

Just a low key tea party this year. That was what I was aiming for. Just a small scale Blue Sunday where I hoped we’d maybe scrape together £500 or so to send off to The ME Association to help them carry on with the vital work they do. I was little dumbfounded then, to hear that this year’s tea party not only broke the £1000 mark (yet again!) but that it matched last year’s fundraising efforts!

I’ve included some photos from our tiny tea party and from others who joined in from the comfort of their own homes. Every year my main aim has been to have an event that is as all inclusive as possible and that allows M.E. sufferers to meet online and make new friends with others going through the same thing. It’s not much, but it has made a small difference to many of us who live such isolated and lonely lives because of our health.

I’d like to thank everyone who joined in this year, whether it was their first time or whether they’re a Blue Sunday regular now. I’d like to mention Louise who once again held a family tea party and added the £132 that she raised to my own JustGiving page. I’d like to thank the anonymous donator of £200 – I still don’t know who you are! Thank you to those who donated some of their disability benefits or allowances. I understand how much of a chunk £5 is when you are living in a way that means every penny counts. And I’d like to thank my parents, who are the real heroes of this piece. Without them and their support and help, there would be no Blue Sunday.

Ready for the off

This year, it was just me and my close family at the tea party and we all met at my parents’ house for tea and cake. Mum went rogue though and we had a full roast dinner beforehand! It’s a wonder we managed to eat any cake at all afterwards.

Lucky enough with the weather to sit outside
The perfect tea party bunting. I made it myself a few years ago after teaching myself to sew
As there weren’t so many mouths to feed, I managed to make something a little different this year
#FlatDebbie joined us all the way from the USA. She travels to places that Debbie cannot travel to since suffering with Severe M.E. You can follow her adventures on Instagram @debs.not.done
My Aunty makes the best lemon drizzle cake I’ve ever had! It wouldn’t be a proper tea party without it!
My sister’s offering! The ultimate chocolate cake!
Once again, it was heartwarming to be joined by so many people online who shared photos of the cakes and treats they were enjoying on the day.
It was so lovely to see others using Blue Sunday as an excuse to dig out the best china and having friends and family over to have their own little tea parties.
This year, because there was less to do in the run up to the event, I was able to offer a Blue Sunday Giveaway with prizes bought and donated by small business owners who also suffer with chronic illnesses. It went down so well I hope to do it again.
The girls were drafted in but I must admit I was disappointed with their lack of enthusiasm. From left to right, Juanita, Delores and Rowan

Choice

I found this photo recently. I’m guessing it was maybe 2012? That’s what most of the first few years of this journey looked like. Seeing myself in photos like this used to make me so sad, and there is still an intense fear of full-on relapse, but I can also feel immense pride looking at this photo now.

I can’t stress enough how little control you have over M.E, but when I sit and think about it I did have choices to make back then and the choices I made then, have helped get me to where I am now.

I believe wholeheartedly that most of it is down to luck, & down to circumstance. I had/have an incredible support system and no other commitments other than the one to myself; to do what my body needed of me. Most essentially, I could rest. Rest and rest and rest. There was no job to try and keep (I stopped working weeks into getting M.E.) There were no children to raise. No bills to pay as I was back in the family home being cared for.

But that 21 year old girl who sat through CFS/ME clinic group sessions with the most toxic & depressed people she had ever met stayed focused on her own journey; theirs became irrelevant. They were deeply unhappy people. Some had suffered for decades. They used the group sessions to offload and I cannot express enough how damaging that was as a 21 year old newly diagnosed sufferer.

I became quite confused by their misery; they were all working, raising children, going out some evenings. I was being spoon fed by my sister & too weak to take the lid off the pen in the first session that required us to write our name badges.

It wasn’t that I felt more entitled to feel miserable or that I felt they should be grateful. It wasn’t that they weren’t justified to feel exactly how they felt. It was a genuine confusion; because I had already started to celebrate the tiny wins & could feel how good that felt. Why was I different? Why wasn’t I miserable?

I came to see it as pure luck that my mindset was different. What upset them most were their expectations & their constant need to make comparisons; to their peers, to their old selves. And I was new to it all; not yet worn down by years and years of such a devastating illness. But almost 9 years in, my mindset remains as it was; seeking out any glimpse of a silver lining. I am learning to champion these things that make me me. Some days I spiral, as anyone would, and cannot feel anything but utter despair for how destructive this illness has been on my life and the lives of those around me. But I bounce-back each and every time. So far.

After just one session I nearly didn’t go back. I came out sobbing; absolutely terrified that my future could only be like their present was. But I did go back. I sat through those wretched sessions; sessions that wiped out the whole of the week. And I took from them the snippets of information that applied to me. And the fact that my younger, more-vulnerable self felt brave enough to go back & sit through those sessions with those people makes me so proud of her.

The sky is not the limit

If there’s only one point I manage to coherently make during M.E. awareness week 2019, I want it to be this.

You cannot push through M.E

You cannot fight it in the same way you might fight other diseases and illnesses. I despise that rhetoric anyway. (If I ever die as a result of an illness please don’t ever say “she lost her battle but fought so hard” Eurgh.)

I strongly believe that with M.E. you must work with it; you must be on the same team as your body. M.E. myself and I.

Your body is struggling. It is not producing energy properly at a cellular level. That impacts EVERYTHING. You must be kind to it.

With this in mind, I feel it’s important to quit while you’re ahead. Take Saturday, for example, when I was out with friends for three whole hours. I probably did have enough energy in the tank to stay out for another hour. But that would have been living right up to my body’s limit; using 100% of my energy supply. If I hit that limit there is no more of me left to give. Nothing. No energy to function properly even at the most basic level; digesting food, processing what my eyes are seeing…

And absolutely no-one, even those fully fit and healthy, should be reaching their maximum limit. It’s just that with M.E. the maximum limit is far far far lower than it should be. And so we often feel we SHOULD surely be able to keep going and do more

It’s frustrating for us but our 100% is less than a healthy person’s 100%. Our bodies are broken at that cellular level. A healthy person would not be able to push through once they’d hit their maximum limit. It’s just that they hardly ever reach it, because their energy supply in abundant.

Instead I try to always do 50% or so of what I feel able to.

Let me tell you, that is HARD. When you rarely go out it would be so easy to get swept up in the excitement of BEING OUT OF THE HOUSE and staying out as long as you possibly can. The punishment you’d get from your body after doing that would be off the scale. I do do that sometimes. But it would be silly to do it often, or regularly. That’s the last thing my body needs from me.

How can I expect my energy supply to replenish if I am constantly using it all up? Every last drop of it. It never refills properly anyway, so…

That’s what I want you to know. That there is less energy in our tanks than in yours. That pushing through to achieve the things that you feel we should be doing is simply not possible. The energy supply simply is not there.

Rediscovery

When your whole life has been altered by illness, and absolutely every aspect of it consumed by that illness, it can be very hard to know who you are anymore.

When I became unwell, I was only just a History graduate. Only a couple of months after the graduation ceremony, my life was suddenly very, very different.

July 2010. Come September life would be very different

I have never had the chance to know who post-university Anna is.

In some ways that is good. The only comparisons I can make are to compare my life to the lives of my peers, as hardly anyone is exactly the same as they were at the age of 21, regardless of health conditions. But the lives are my peers are very different to my own and comparison really can be the thief of joy. It’s something I’ve been able to stop doing for the most part.

Absolutely everything post-university has been impacted by my health from the things I can eat and drink, to the things I can comfortably wear, to the friends I have, the hobbies I’ve tried…

The parts of my life that have most skewed my sense of identity are:

a) I am on disability benefits. (For one, money means a lot in our society. And so it can be hard not to measure your worth on how financially independent you are.)

and

b) I have a health condition that has an extremely damaging stigma attached to it.

These things have not been good for my sense of self worth or identity.

I am no longer her but I don’t know who I am…

But I am starting to learn, and I’m rediscovering, who I am.

Recently Mr Tree Surgeon was very unwell and our roles were almost reversed. He became bedbound and unable to do anything other than get himself to the bathroom.

Seeing him so incredibly unwell was heartbreaking. I have no idea how he copes with me being that ill so often, and poorly to some degree every single day. It was awful. I genuinely don’t know, if I was him, if I’d have been strong enough to stick around in a relationship. For me, it was a new kind of desperation.

It reaffirmed my belief that he is an exceptional human being for entering into a relationship with someone who has complex health restrictions. But in a strange way, it also made me realise that there must be something within me that makes it all worthwhile. That I was worth entering into a relationship with.

My friends have not stuck around through pity, as I shared recently. There is something about me that they value. Perhaps there is something so good within me that makes friendship or relationships worthwhile for others, despite the awfulness of my health, the constant cancelling plans, the unpredictability of things, the needing to make meet-ups more accessible for me, the confusion over the difference between good days and bad ones.

Perhaps I’m worth it. And almost nine years in, I am finally starting to see that. And it feels odd to admit it because I don’t want to come across as smug or egotistical.

That last summer. 21 year old Anna.

For me, my health impacts everything and it is incredibly difficult to separate it from my personality, partly because I never had to the chance to meet that post-university Anna I’d assumed I’d become. So I have no idea where the illness stops and Anna starts. I am learning that I am not my illness, even though it is in fact all consuming. It is very confusing and it is actually quite hard to do. In fact I can’t quite articulate how hard it is and actually how bizarre it feels to be trying to do this.

For starters though, I like being in or near water. That’s something about me. Something that’s about me and not about my illness. Eight and a half years is a long, long time to have felt lost. And it is going to take a while to sift through and separate myself from M.E. But like everything, it’s a work in progress.

Taken last week after a medical appointment. Sitting by the river for 5 minutes before having to go back home to rest