A Day In The Life Of M.E – A Poem

I sit in silence; my brain kicks in
How did I get here in life?
Not going anywhere, not doing too much
As my illness gives me strife

My every day seems simple
I sit, I read, I watch TV and sometimes like to write
I don’t spend long out of the house
For my energy is slight

Most of my day I feel drowsy and rest is all I seek
I enjoy a plod with our cheeky dog
But don’t plan much past the same week

I like to meet new people
But don’t ask me what I do
It fills me with great angst
I know you’ll judge me too

You sit and laugh with me and we set the world to rights
But then you had to quiz me
About not working, to you I look alright

You only knew me a short time
And you think you know my life
You will never know the suffering
The exhaustion day and night
My weakness as I try to walk, my inability to talk
Loss of thinking, loss of focus, loss of erm…what’s that word again?

I enjoyed your company in part
But then I saw your different light
You forget we’re all just human
So different in our own right

You disrespected me and left your manners behind
But don’t worry once you’ve left here
You’re out of sight, out of mind

I sit in silence my brain kicks in
Thoughts running through my head
When will I make it out again?
What ventures lie ahead?

Maybe meet a better person
Someone caring, someone kind, someone true
But for now I rest, relax, find calm
Daydreaming over a brew.

10 Things that made my weekend away more crazy and less hazy.

It took 8 months (yes specifically 8, I checked the chat history) to plan and book a weekend away with friends. We all missed celebrating our 40th birthdays together during lockdown so it was well worth the wait, plus there were many deliberations among the 8 of us, and that kept us somewhat ‘entertained’ in the meantime (diplomatic use of inverted commas there).

After my night out with friends, the other week, I was feeling confident I could manage a night of drinking but what would a whole chaotic (I know my friends) weekend be like? Well, I thought I would be writing about my fatigue struggles but since everything went very smoothly, I’ve decided to give some thought about what I feel helped keep me going.

Our stunning holiday cottage

Where to stay? A holiday cottage far out-weighed any hotel. Here’s why:

No.1 – Being in a hotel usually means being in one room. As nice and as big as some rooms can be, if I did feel I could only stay on site, leaving the room would mean being around other guests, making small talk, looking more presentable etc this is all energy zapping. I can tell friends I need to sit in quiet but telling a stranger would just seem rude.

No.2 – If you rent a place which has outside space, there’s nothing more relaxing than sitting in the sun with a cold drink. Hotel grounds can be nice so you can do this too but you’re relying on their service to bring you a drink and again you’re close to other people which may not be so peaceful or relaxing.

No.3 – A cottage gives you space to retreat to your room for peace and quiet at any time. No long corridors, no “where’s the door key?”, no waiting for the maid to finish cleaning, no strangers to pass on route. Just off you go to relax in your own space and time.

No.4 – A hotel generally means set meal times. While I could possibly make a 10am breakfast the effort in getting up, dressed and being around strangers can be hard and almost certainly cause a crash after. It was much nicer getting up in my own time, going downstairs in my pyjamas grabbing a brew while I assessed what I could manage that day. The same goes for lunch and evening meal. Set times mean a time pressure to be there, being unwell means I need flexibility.

No.5 – If I were to crash, a hotel could mean I miss an entire meal. A holiday cottage has cooking facilities, so our time was our own. I ate breakfast at 8am, yes in my pyjamas, then went back to bed. I then ate at 11:30am (cold pizza from the night before, ha!) then we headed out. Not only was I not hungry too soon I also could join in with ice-creams later.

Delicious Thunder and Lightening

No.6 – Room choice. I hadn’t realised how being unwell has shifted my priorities and now what I consider a luxury to be are anything that makes my life easier, calmer, more peaceful and above all more energy saving. There was a choice between a room with an en-suite or a larger room with chairs and a dressing table. I had to mentally play out my weekend to decide if I actually needed to shower at all and if sitting on a bed rather than at a dressing table would be better for me. I gave up the en-suite. I would only use the main shower once and since I wanted to attempt make-up and dry my hair, which I do sitting down, the dressing table would be best. Plus, the other chairs I could relax in and switch off in peace when I needed. My friends of course were made-up with this decision too.

Huge bedroom, a welcome retreat and perfect to relax.

No.7 – Packing. In my well days I’ve often tried to pack light. Not now. I’m sick. I compromise enough. I want everything to help me feel comfortable and if I feel I can use hair straighteners then I will take them. Looking nice gives me a boost. I’m on holiday, it’s a time for freedom. I like my partner’s mantra ‘’if it fits in, we can take it’’. Ok then, I will.So accommodation is important. Now here’s 3 things that I personally did to keep my fatigue at bay:

No.8 – I put down my mobile phone. At home I find myself picking up my phone first thing on a morning and either scrolling social media or playing a game. Time runs and so does my ability to see straight. I can literally start to crash after a solid hour of browsing. Not this weekend. I only used my phone about three times and one of those was to take photos.

No.9 – Be with good people. My friends didn’t question anything I did or didn’t do. We decided together what we wanted to do or where to go and it was an easy unplanned slow-paced day. My partner also was a huge help. He understands better than anyone the help I need and just gets on with it. Good people around you, takes away the stress of feeling like you have to justify yourself. Remember, any negative emotion zaps your energy too. Plus, you’re on holiday, you should feel free in every sense.

No.10 – Relax. You are there to have fun. Try not to pre-empt how you would feel if you do this… and how you would feel if you do that… I knew I would be eating high fat, sugary foods and drinking alcohol and that doing so would keep my energy levels high. I also knew I had the following week to recover. On a morning I ate breakfast and then went back to bed. After our afternoon out I went to bed for an hour. If I needed space I stayed in my room. I did what I could, when I could. I didn’t get drunk and then refuse to have a day out in case I crashed out and missed the evening meal. I think my relaxed mindset must have reduced the stress in me, thus giving me a bit more energy to keep going too.

All of these things helped me get through the weekend fairly smoothly. We had a late night Friday night, up until 2am. We had a bimble along the lake shore and sat by the Harbour before a game of crazy golf (I didn’t win, boo!) and a walk through the town. Ok, I didn’t go as wild as in my well days. I mean drinking diet coke, with my evening meal the next night, and going to bed at 11pm was pretty much unheard of in the past but when you’re unwell and that’s all you feel like then that’s ok. I had a good time with great company and above all escapism from the norm.

A relax in the garden before home

My partner and I have booked our next trip. We’ll be staying in a camping pod. More comfort than a tent, less space than a cottage but still all the freedoms. This could be an interesting escape.

Definitely watch this space.

Letting Loose

As soon as my partner told me we were going out for a meal with friends on Saturday night, I tried to stay calm. This is a good thing. Something to look forward to. Something I have been longing for. It was no good, my worrying mind dominated my thoughts. Since lockdown lifted, I had only met up with my family, drank mostly soft drinks and had early nights. This situation was different. People I hardly knew and who hardly knew me. Now my mind was racing. What will I drink? Will I be able to have a night of ‘normal’ drinking? What will be asked about my job? How should I reply? Should I prepare to say it’ll be an early night? Oh, wow I’ve never felt like this before. I visited each thought and tried to answer sensibly with solid replies that couldn’t allow for judgement to be cast. After all that was my main fear. I want to enjoy the night and have them enjoy my company too. After much pondering and churning over every scenario about the worst ways my body could fail me, and that an early night was inevitable. I give my head a shake. I sat up straight and told my self what will be will be. I am unwell and if I start to crash out, they will see I am unwell and then the worst thing is I’ll go home and sleep. That is really not that bad. So, I continued the rest of the week with my new determined mindset… I will have a good time.

The night soon arrived. I had a shower the previous night to conserve energy, applied a thick layer of deodorant, a smattering of make-up, my partner straightened my hair (I know, amazing right?), squirted some nice perfume and I was done. I was donning a nice, summery, new to me top. It was £6.50 from a charity shop and hardly worn, I love a bargain! I looked good, well alive at least and off we went. We had pre drinks at a pub before going to the restaurant. I had 2 halves…go me! And everything was feeling very smooth. There was a couple of times I had gaps in my conversation (brain fog not giving me the correct words I needed) but I don’t think they noticed. At least no-one mentioned anything so to me they hadn’t noticed.

I did have a couple of heart sunken moments when we met another group of people in the pub. The conversation turned to missing holidays and what people’s plans were for the rest of the summer. I went quiet and just commented on the places they were talking about. It seemed to gloss over the fact we don’t have such plans. A holiday abroad even the new, and aptly named, ‘staycation’ is too expensive, too tiring to plan, too tiring to navigate an airport and there’s the umpteen rules to get my head around. I’d sleep the rest of the time after getting through all of that. Still, it wasn’t too long before we left.

Next up was the restaurant. I had already looked at and mulled over the menu options at home, so that speeded up the reading process. We all ordered and after having a couple of beers I felt brave so ordered a large red wine with my meal. I mean push…the…boat…out, I am going for it here! It was such a good evening. Great food, great company. I slurred a few times but just made a joke of it and blamed the drink. Actually, it probably was the drink, I hadn’t drunk in some time. I still had a 2nd glass though. I was so proud of myself.

Steak and Mediterranean veg. Delicious.
(Pic by Piccolochorley.co.uk)

We finally had another drink back in the first pub. I was loving life, I felt normal. There was no asking how I was feeling, no asking about a job I don’t have, no asking about my illness in general. It was and felt like a ‘normal’ evening. I had such a night off from being with myself, I relaxed and enjoyed hearing other’s stories.

So, the night went well after all with lots of joking and laughing. It really gave me some escapism and a proper feel-good boost. I did start to fade more towards the end and it was only 11:30pm, so I’m not sure how much more I could have coped with. I’m just glad I got through it and I really appreciate the good people in my life. I suffered in the next few days but it was worth it. Well, it may be a while now but I know I can relax and look forward to the next night out.

I’m still smiling writing this blog. It just goes to show how a few hours of a good time, brings a joy that can last 10 times more.