Category: Updates

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 🙁

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!

Yes, 55 already and I really can remember being just 5 years old ever so clearly.

Mum played this trick on us, she convinced us that somehow she could see from the kitchen into the front room. I spent an age examine the wall trying to work out just how she did it. I knew my nan had an old gas pipe between her rooms we could look through but we didn’t have it in our house. Mum somehow convinced me it was magic paper on the wall that only adults could see which she looked behind. Anyway, I was 5, it’s a lovely memory and half a century ago. I can still feel that happiness seeing mum smiling, laughing at my gullibility.

I believe my Dad retired at about my age, boy how I would like to be able to do that now. I enjoy work on the whole but, all the same, the freedom to do whatever I want is also appealing.

This year I likely won’t get a vacation. Dennis wants the money to go see the family back home and, it feels wrong to deny him but, even so, I could do with a good holiday to look forward to and go on. Next year it will be us saving for the visa so, I probably won’t get a holiday then either especially if Dennis wants to go to the Philippines again. He doesn’t see that as a holiday just going home. I think I could make a holiday out of it but, oh well.

Sean & Daisy move out next month and that means, we’ll need to get a lodger unless something quick happens with our finances meantime. That’s not impossible, just unlikely!

Some of my Guests

The kids did me a wonderful birthday party on Saturday 2nd. THis picture is missing some guests who arrived a little later but gives a taster … I believe it is Tom & Jimmy with Matt too who had gone to be the taxi driver.

I didn’t have to do any preparation or clearing up and the house was cleaner than it had been for ages.

I have been using Instagram a lot more recently, search for ‘antipololand’ on there to add me. Facebook is OK but, in many ways, Instagram is just better and more happening there.

Some people believe I only post negative stuff so, this might come across as a little negative but, I want to explain something to you about me.

I am always tired. Sometimes I am so tired I feel like I’ve not slept in a week, other times I feel like you probably do when you go to bed, that end of the day feeling when you’ve done your stuff and are ready for sleep. Most times I wiggle between those feelings, normal bedtime tired is a good day.

So occasionally I might just not see enthusiastic about things. I want to be but I just don’t have the umph for it.

As with all of us when we’re tired, I might feel so tired I am just grumpy, that’s because actually I am sleepy even if it seems dopey to be like that. There is nothing the doc can do about it either. Don’t be bashful, if you see me like that, give me a hug and make me happy but, if you are wearing a strong scent, you might make me sneazy. This is how life is for me, heigh ho.

Even when I am mega tired my sense of humour is still there.

Whilst I am still awaiting an official diagnosis, all the other things which make us tired have been rules out so, it looks like I have M.E. (Myalgic Encephalomyelitis (M.E.) is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. M.E. affects an estimated 250,000 people in the UK, and around 17 million people worldwide.) 

I am not looking for sympathy, just understanding will do. My sister has the condition and, to be honest, is a fair amount of my inspiration to fight through it. If she can go to work each day, so can I. I do honestly wish I wasn’t working for over 60 hours a week to get paid for just over 40 but that’s currently the nature of the work I do. I honestly do not know how much longer I can cope with that pace but I will keep going as long as possible.

You know you don’t look good when some of your clients offer you their medication to try and make you feel better! (No, I don’t accept)