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ME with M.E.






… Sometimes … well, most times …





My brain is working on hyperdrive. I never stop thinking about all sort of things, not worrying, thinking. I could be trying to remember what we have in the freezer. How am I going to pay the bills? Is this task or that task going to get done? Do people like me? I am going to concentrate on that idiot driving in front of me, watch my speed, keep my distance, time my route, get there on time, park here or … maybe there. When I get there I am going to, several different options, think on that. My knees really hurt, my vision is blurred again, my eye feels like sandpaper is rubbing on the inside, my hearing aid is whistling, that’s really annoying and, I can’t hear the music either. Memo to self, change playlist, add this, take away that.





That’s the first few minutes of just a single journey …





Every day I get all that going on, all the time, every waking moment of every day all at the same time as my body is telling me it’s going into shut down mode. I am too tired, I’ve not had enough sleep, the more I think the more I am going to feel crap. By 3pm I feel how I used to feel at 3am. Sleep only takes those feelings away, it turns off my complaining mind and body and kills some time. Then, I wake up and it all starts again.





Pain? Discomfort?





For sure, I’ve what is referred to as ‘my allergies’. It’s a cover for what the real issue is. I have allergic rhinitis, this means a great deal of artificial chemicals, even if I don’t knowingly smell them, make me feel ill ranging from sneezing to flu like symptoms. Yeah, that sucks. I got a condition called ‘Uticaria’ … yeah, WTF right? It means my skin is stupid sensitive. Without a lot of meds I look like a mild burn victim or a someone who does repeated suicide attempts with a razor blade. Any pressure anywhere on my skin makes it crazy itchy. It lumps up, goes bright red and can last for hours, I mean, any pressure, anywhere. Not too many details but there is no underwear which stops one part of my anatomy feeling pressure from another and when ‘down there’ has an itch like no other itch, it’s hell to ignore it. Arthritis in my knees, yeah, that sucks too. I got pains in my left arm now too, you know, just in case I was feeling like I was missing out!





So, what do I do?





Fight on,.Hey, you think I have choices here? No, this is my life! Barely any of these are visible conditions, many on their own are horrible, together, they’re unbearable at times but, even those who know forget. When I say I am feeling whacked, that’s me saying, no, not just now, I really can’t. If I say ‘OK’ that means, sure, I’ll feel like shit but, either, I need the money or, you’re worth what I am having to go through. So, I work through because, that really is the only option isn’t it?





Does anyone care?





Sometimes


Posted on

All change

I have got myself stuck in a bit of a rut. Not entirely sure which direction to go down except that, as I clearly need an income, I got to get myself employed fully again.

The weekend job had to go. This is a no blame statement but the reality is, I needed 15 hours, I rarely got close to it. That was not sustainable. I was still holding onto it though hoping it would get better. Last weekend, because of some mix up or another, I went to work early according to the rota I had to be told after a half hour my rota had been cancelled. That to me was a reality check. Time to call it a day in as dignified a way as possible.

Thankfully, I was already looking elsewhere, as I said, I needed more hours, more regular, it was common sense to see what else was available. It’s not a firm offer as yet but probably will be.

For now, I am just working the two day week. I love that role and don’t want to give it up so am trying to make any new job work around it … I am still open to a lottery win of course!

On a different note … I am having issues being able to prove I was a social housing tenant from 1987-1995. It makes a significant difference to how much I’d have to pay on this house if I am able to purchase it with Dennis … not that a mortgage is likely with all this messing about but I got to try at least. If it doesn’t work now then, at least when I have been working for 6 months again we can try again then and I’ll have all the information to hand.

Hopefully, at some point this week I shall allow myself a lay-in. It’s been ages since I had a week off and, as is often the case with me, it really isn’t being a week off! Such is life.

Posted on

Feeling low

I am struggling is the actual truth here. Making things right seems a little beyond me at the moment. I thought 2 jobs would be enough but now I’ve had to apply for another. I thought with what was being offered, getting a lodger would be easy but, it seems miles off. 

Coping with constantly being tired is no joke, it really isn’t.

As if the M.E. wasn’t bad enough, clearly lack of self worth is contributing to the tiredness.

I think I just need lots of hugs from my mum 🙁

Posted on

Dear Mum

Dear Mum

When I had nightmares is was about losing you. I’d wake up sweating after you had fallen off a cliff or just stopped breathing reading your book (Catherine Cookson most likely). Sometimes, because of those dreams I’d just sit there watching you making sure you were still breathing. You were my world, my anchor, my rock.

I was growing up, I know I wasn’t being myself, I know that how I appeared to be was what Dad expected me to be, all the men in the family were real men, top of their sports. They were not like me, I was not like them. I wanted to have that conversation about how I felt different but, I had time, I knew I had time and, well, I was a long while off grown up yet and, things might change, isn’t that what they say? You never really know for sure, not whilst you are young?

Mum, I should have told you, I should have got to know you as an adult and not kept myself your little boy. It was my safe space, my sanctuary to come home to you, things as they always were, even with the upsets of the mid 1980’s you remained my mum.

Only once did I ever feel like I was a grown up with you, that night you sobbed to me about Dad, how you needed me to be strong for you, and I was. It felt amazing to be there for you and yet, I still didn’t commit myself to saying what I should have said. You never knew me and, I suspect, I never really got to know you as a woman either.

You last knew me as the immature young man rushing into a marriage, a kid on the way and making a mess of life. I didn’t think about you then, I didn’t need to, everything was going to be good. You’d have your first grandchild, we would find a way to make that work, you would get to spend some great times together. You would be his rock as you had been mine.

After that horrible morning a great many years ago this week I went back to our home. Your dressing gown was where you left it on the bed, I folded it up not knowing quite what to do with it. I cried. Your brush was in the bathroom with your hair in it, I cried again. So much of you was there except, you. You had been an angel in the shape of my mum and God wanted you back. It released you from all that physical and emotional pain and, for that, I shall always thank him, he did the right thing.

But, mum, I didn’t get to know you. I thought I had more time, I didn’t.

Mum, I am gay, I always have been as long as I can remember. Trying to be straight was so hard for me. Too screwed up to be myself, too afraid to make a leap of faith and trust I’d be held.

I am sorry, I am sure that where you are you see me. I am happy now. Being gay is only one part of me, I am the little boy all grown up. I still and always will need my mum. Thank you for the love you gave to me.

You would have liked Dennis I think, you would love your grandchildren and great grandchildren, they would have love you so much too.

I miss you mum, love you always

Your son, Steven