Monday, 13 April 2015

Thought-provoking problems. What's to come?

Hello everyone, a little soon to be posting after my previous post but I'm going to go into a little more detail here. I also would appreciate others thoughts regarding their own experiences after I've written this entry.

A lot of you will know it's been a tough time for me. My great great aunt passed on Friday which was sad. I also lost my remaining 2 girl rats who were very special to me. I've mentioned before a few times about losing someone I love so I don't need to say any more on that matter. I feel I've been treated unfairly after all I've done but rather than hate, I pray because I know they have a lot of issues going on. Then there's the usual frustrations which were playing on my mind as I realised I was a year older last Wednesday when I turned 24!

So regarding my aunts death, we (my mum and brother) were present as she died. She was unconscious when we got there and it was a strange experience as I'd never been present at something like that before. We didn't see her that often but we were the only family that visited. The night before Gracie (rat) was put to sleep and the same night as my aunt dying, Mags (rat) was put to sleep. I needed to rest on Saturday but ended up visiting the nursing home where my aunt was to sort her room. I needed to rest Sunday but was on the rota to help out with the young kids. It went well and I enjoyed it like I always do, but still no rest. Monday is here now and it's been relatively quiet, the funeral has been arranged and everything is going smoothly though tomorrow I'm driving out of town to register her death before the funeral next Tuesday. I had to get a shower today as I hadn't had 1 in 4 days, my skin starts to go very dry and irritable. It took a lot of effort but it needed to be done.

I also mentioned at some point that my GP wouldn't give me any more pain relief. She would, but she'd only put me back on what already didn't work for me. She needs 3 weeks to get a letter from my OT (who discharged me) which says I should be referred to a pain clinic. However, there's lots of forms to be filled out too totally unrelated to that. My ESA medical is coming up at the end of the month and the PIP forms need to be filled out. I'm sure there's more but I can't think at the minute. My doctor knows nothing about ME and is therefore not very good about the illness. She refuses to write support letters too and my OT was the only 1 who would do that.

It's crazy I even have to consider this but it just shows something needs to be done with regards to treatment for this illness. In fact, understanding is a good start which I'm not getting from the GP. She always refers to it as Chronic Fatigue anyway. ME and Chronic Fatigue are different things!!! I don't just get tired, I get pain, immune problems, intense brain fog, sensitivity to light/sound etc. Anyway... and hear me out before coming to conclusions... the thought to hospitalise myself has come to mind. I don't want to self-harm or overdose. I tried that and have overcome very bad depression. The reason I even have to consider this is because I feel trapped with my GP and her refusal to help me. If I overworked myself to the point where the pain was unbearable then maybe I'd be taken more notice of if I ended up in hospital? Of course I couldn't do it at this moment as it would be selfish considering my aunts funeral is coming up. Her local family probably won't be coming and her other nephew said he couldn't come if it was on Monday as he has to wait in for a phone call from age concern regarding food orders... honestly, I am not joking. This is why I'm so close to my mum, the rest of my family are incredibly selfish and don't care... Anyway, with lots of things coming up I could well end up a lot worse anyway which isn't really avoidable. Would the hospital give me pain relief if I was that bad? Well it's debatable, they wouldn't give me crutches when I had severe leg pains a couple of years back. In fact it wouldn't surprise me if they had the audacity to refer me to a psychologist. How can you win? It's not about winning, it's just about getting the right help you need.

Is it also wrong that I have to sort out my own aids to help me function? I'm having to invest in a shower seat, computer software as excessive typing hurts and a kitchen stool because I find it hard standing up when the pasta is boiling. I had to invest in my own walking sticks and crutches, I once had someone come round to the house to give me a walking stick but I was pretty taken aback by his response when he called round. He made no effort to hide the fact he was shocked it was me he came round to see so I just thought why bother.

I know times will get better and I'm wise enough not to do anything stupid, but there are things I really need to think through. A supportive doctor would make all the difference but the question is where do I find 1?

I'm sure a lot of you (most actually) have had these thoughts and it'd be interesting to see if you've had any solutions or if these problems are still wearing you down?


Barry x

Friday, 10 April 2015

A Rambling Speech

Hello everyone... I know we're in the first couple of weeks in April but I'm calling it March's update anyway as I usually struggle with title names for these posts!

First of all, you can see a lot of my recent thoughts expressed in my last video blog:

The main theme here is FRUSTRATION!!! With some hurt too...

It's been difficult, I turned 24 a couple of days ago and rather than celebrating, I just wanted to hide in a corner. A few years ago I was hoping to have my own place and being relatively successful in my job. It's just not happened. My health hasn't enabled me to fulfill my ambitions.

I actually wrote a good few lines on something I've briefed over in my last couple of videos but I decided to take it out. I think sometimes it's good to get things off our chest but not when there's a potential backlash. It doesn't matter even if you're right and feel like you need a bit of support, some things aren't worth the stress. All we can do is pray which is what I do a lot of.

I'm sat here in Costa writing this, have been here about an hour but leaving soon. I had a doctors appointment at 8:30am which was a waste of time. I can't really concentrate due to background noise so my writing may be a little disjointed and not as smooth.

I've mentioned before that I was discharged from the hospital as my OT said there was nothing more she could do. She was going to send a report to my GP and ask her to refer me to a pain clinic. The report hasn't arrived at the surgery yet so I've got to wait another few weeks. My GP said she doesn't think they'll see me at the pain clinic as the pain isn't in 1 particular area. I know this isn't true as lots of ME sufferers attend pain clinics. I also asked about going back on my pain relief medication and she gave me just 2 options, the ones I had already been on and another one. I know a lot who are on Tramadol yet she never mentioned that. In fact I don't think she knows anything when it comes to ME. I really need a new GP.

I've tried to push through the fatigue this past week or so. This situation that has been playing on my mind is eating away at me. If the other person knew this they'd probably be shocked. It's hurtful knowing I may never speak to them again when I feel I've done nothing wrong and I've always put them first before my health. Anyway, I'm at the stage where I just want to do things to occupy my mind. I'm not really thinking about the after effects, I'm 24 and I want to start living my life. I've been deprived of my 20's so far. I feel like I need a new start and only my health is stopping me. My ambitions are still the same but I'm getting fed up of all the same surroundings. I'm finding it hard to trust those around me and feel in some ways I need to start from scratch.

I don't go into detail often about my ambitions because I feel embarrassed about saying the same thing over and over. If I know someone isn't really interested then I'll close up and give nothing away.

In some ways I feel broken but others I feel it's just the start. Which one depends on which path I choose to lead. I can't hang around and maybe deserve a little more respect. In some ways I'm discrediting myself.

I've just decided that I have a new title for this post, very random but my mind is always a little random!

Hope you're all well as can be,

God Bless,

Barry x

Wednesday, 1 April 2015

My typical day!

Hello everyone!

I just wanted to share a picture with you that a friend had shared on facebook. I feel like this picture summarises my life at the moment very well.

Every morning is a massive struggle because I'm exhausted. It's the worst time of day for me. The pain is at its worst and my brain is so foggy that my head keeps dropping.

If I've mustered up enough energy to rise and shine in the morning then I'm dying for a nap come afternoon. Having said that, I'm dying to nap even when I haven't had the energy to rise and shine in the morning.

It's impossible to get through the day without some sort of rest which means it's hard to sleep at night. Even when I'm shattered at night I can't sleep.

This pattern recycles itself daily and although some days are better, the pattern is still there.

I'm sure a lot of you can relate to this which is why I've shared it.

Hope you're all having bearable weeks x