Suffocated

Sometimes I feel suffocated by my mobile phone.

For ‘safety reasons’ I should really have my phone on me at all times. My health can change in a instant. I need to be able to call or message for help, as I have had to do so many times oer the years now. I don’t have my emergency call button alarm anymore. The local council had to increase the cost of having one because our government is atrocious. So now I rely on my mobile phone instead.

If I call someone rather than text them, they panic. There must be something wrong with Anna. She must need help now. In the past, I have written a disclaimer at the beginning of text messages to my parents if I’m texting them while they’re at work: “This is not an emergency and there is no need to panic!”

If I read a WhatsApp but don’t reply, people panic. Once I had started typing a reply only for the doorbell to ring. So I left my WhatsApp open and the recipient could see I was ‘Typing’. After I’d closed the door I went about making myself a drink, completely forgetting I was mid message on WhatsApp. The next thing I knew, my husband had burst through the front door in a panic thinking I had fallen and was in the midst of an episode of paralysis. I was fine! But I understand the worry. It must be awful for them. I’m incredibly grateful for their care and concern. But sometimes I feel suffocated.

I’d love to leave my phone on the side for the day just to feel a little more free. But if a message goes unread for too long, then people worry that I’m not okay. In the past, my silence has meant something is very wrong healthwise and that I need help. So of course people are going to be concerned. But sometimes I don’t want to be glued to my phone all the time or have to reply to messages immediately. I guess I just wish they could read my mind.

If I am having one of my rare solo drives to my parents for example, I have to text everyone as I’m leaving, and as I’m arrive, and then as I’m leaving again. Aaaaaargh. That actually takes up energy! But I know I need to stay safe. Maybe we need a code. I could simply reply with a certain symbol.

Turning off WhatsApp notifications at the beginning of this year was such a good thing to do. Now when I look at my locked phone screen, I cannot see the unopened messages I have because I was starting to feel overwhelmed by them all. What a problem to have hey. But I am incredibly susceptible to stress and stress to me is very different to stress to a healthy human being.

I don’t have any social media apps on my phone anymore, and haven’t for a long time. I also try to only use my phone for messaging and the rare phonecall. It’s lovely to have people check in on me. And I do need them to. But the weight of it all can become heavy. Sometimes I just wish I could have the odd day where I was safely able to be uncontactable for a little while. That’s true freedom and independence to me…

Reviving ‘My’ Wednesdays

Most of this year had been dominated by counselling. First it was every Tuesday. Then every other Tuesday. And now I hope it will be just one Tuesday every month.

When your health places so many restrictions on your life, like my health does, something like an emotional weekly session completely dominates the remainder of your time. The preparation rest. The recovery rest. The exertion of getting there, albeit only minutes away. The concentration and cognitive function needed to get through the 50 minutes. And then the emotions themselves. It wasn’t something I entered into lightly but you’ll likely know by now that it is my struggle with childlessness that led me to seeking help. (I plead you not to offer any unsolicited advice on this.)

Absolutely no obligations on a Wednesday so savouring the Autumn sunshine

At the start of the year I wanted to make something of as many Wednesdays as I possibly could. They are the only day I have to myself. They are sacred. But then I started counselling and so my weeks have been spent recovering from each session in the many ways one needs to.

Perhaps it’s a strange thing for me to crave; these days to myself. Afterall I live such an isolated life. It’s just that it’s the one day I can properly relax because no-one is expected to call in at all during the day. Rightly or wrongly, if someone is coming at 1pm the morning just isn’t as relaxing beforehand. And there’s something different about having nice time to myself, as opposed to the enforced solitude of Bed Days when I am too unwell for any company.

So now I hope I can manage on monthly counselling sessions, in the hope that I can get a little bit of my little life back. I feel it’s time, and I’m looking forward to making something of my Wednesdays again.

M.E. myself and Anxiety?

I’d say I had my first real taste of Anxiety in the first month of being ill. I had managed to painstakingly slowly cross the road in our little village in an attempt to get some fresh air and stretch my legs a little bit. But then I had this overwhelming feeling that I couldn’t get back across the road safely. I couldn’t trust my legs or my body to do that anymore. They weren’t the legs that had captained every sports team at school. They weren’t the legs that had (begrudgingly) climbed mountains on family holidays. They weren’t the legs that were first up on any dance floor. My journey with Anxiety has gone from there.

There is so much to say about it but finding the words is hard. I will try again another day.

There is too much time to think and there is now so much more to think about. On top of the standard worries that I have too much time to think about and worry over, I also have the bits of life that M.E. impacts to think about. And again, too much time to sit thinking about them.

With a condition like M.E, the sufferer has very little control; over their symptoms, the relief from those symptom. Very little control over aspects of their life that they have be able to independently tackle their whole young adult life.

For me, I have to acknowledge and engage with these worries for them to even start to go away. I feel an instant relief once I’ve voiced certain worries with certain people.

I don’t always want to be told that I need to work on my thought patterns. I know that and I am trying harder than you’ll ever know. I don’t need or want suggestions that might help.

Sometimes I just want to hear that you’re sorry it’s so hard. Because it really is.

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