Year: 2018

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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.

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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 🙁

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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

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Myalgic Encephalomyelitis (M.E.)

I cannot say about the condition, only how it affects me. 

I am sure there are tons of variations depending on the individual who suffers from it.

So, for me. Well, I didn’t just suddenly get it. Even a diagnosis takes many months. I have known I got excessively tired for a couple of years or so. It’s been getting worse though.

Now, my first scary moment was in the gym early in 2017. I could go back and forth to the gym with weeks in between and just about pick up where I left off. I’d do half hour on the treadmill at a fair pace then move on around the weights. I set up the treadmill for half hour, usual pace and then, at 7 minutes in my energy just left me, everything wobbled and coordination went so I pressed the red stop button. I went home and went to bed totally shattered.

I presumed it might be a sleeping condition so went for all sort of checks but it wasn’t that. These things take months to check out. I went for countless blood checks too testing for anything which could possibly cause exhaustion but, none of those matched up either. I do have a vitamin D deficiency, this can cause tiredness but, my GP said that my levels are so low that supplements won’t work and, indeed, didn’t. I am now on some stronger prescription level supplements but the GP expected this not to make a significant difference.

She has told me that I do, by a process of elimination, have M.E. It is also known as Chronic Fatigue Syndrome which sometimes is more understandable.

How does it work in my life, how am I affected?

Well, how much sleep I get seems to make no difference to the outcome. I can get the full 7-8 hours and in the morning I often time feel refreshed for around half an hour and then the tiredness hits and I feel the same as I did before I went to bed. The more I fight it without sleep, the more muscle and joint pain I get, the less I am able to function on an intellectual level. Working through it is a huge challenge. All the feelings are there I just know I have to try and function no matter what. By mid way through a shift I am struggling big time and colleagues are having to carry me. This, in turn, makes me feel awful because I am letting them down but, more importantly (to me) I am failing to work through it.

At no point during the day do I feel full of energy and ready to go do something. I feel constantly exhausted. There are fleeting moments when I think I feel a little better but they’re almost like those times when we’re looking for a name, it keeps coming into our head but we can’t hold onto it long enough to pass the name on. I suspect a lot is just wishful thinking. I know how I want to feel and just for those brief moments I remember how it was when I did feel like that.

The condition can improve or go away, it does in some cases but, I’ve got to deal with what I have now. I honestly don’t know how much longer I can cope with it before I have to call it quits. My long term plans are not consistent with my not working so I don’t want to give up if at all possible.

Right now, to add insult to injury, I have two other issues affecting me greatly:

  • Hearing loss which I am waiting to get treatment for which might take months and I am not sure will ever be fixed. It’s actually rather bad and my deficiency makes me lose confidence. That’s difficult to explain. I guess it’s like a form of paranoia. I can’t really hear what is being said so my brain just wonders if there was something I should have heard, should have reacted to, should have sorted and because I don’t know what was said, I just feel inadequate.

  • A cyst on my right eyelid directly on my eye. This creates constant pressure on my eye causing headaches and some significant degradation in my vision. Everything is just blurred.

Add both those together and it feels like I am just on the fringes of society but not part of it.

So, basically, life isn’t good right now.

I’ve a husband I love dearly but who I cannot fully enjoy 

because of my tiredness and much good weather I just want to sleep through.

All of these conditions are invisible so I am just coming across as a whinging lazy bugger making excuses. When I try and say I am feeling tired I get the standard response of how everyone feels like that … No, I truly and honestly hope they don’t. It’s a little like my saying I’ve a migraine and someone then telling me about the standard headaches they get and how they know what I am talking about. Some things, some conditions just need to be understood and respected. I need help from those who understand to get me through this and no make judgements, not try to compete. Trust me, I am more than happy if anyone wants to honestly feel this all of the time to hand it over for them to win an argument with. I don’t want any part of this, if I had the energy I’d be so damned angry about it!