Time slipping away like sand

I have been on another break from blogging, mostly due to my eyesight and 3 week headache.

Reading or writing has been difficult, and making both problems worse so I’ve been doing as little as possible.

It’s funny how time is slipping by, minutes turn into hours, hours into days, weeks into months without any knowledge of how it’s happening so quickly.

My ‘time lapse’ episodes are making time and days go by quicker than ever. When you’re losing several hours a day and night in the blink of an eye life becomes more and more surreal. I can lay there and know it’s lunchtime but in a second it is early evening with no knowledge of the hours in between. I’m functioning, I’m there physically, but it’s as though I’m going through natural motions and on auto pilot. Thankfully I’m not losing half the day everyday, but it’s still a few hours everyday. It’s as though I come out of a dream, slowly as you do when waking and then a state of confusion wondering what time it is or how it’s 4am.

I’m going to need to tell my doctor as the lapsing has become worse since the headache and non sight. It’s all day everyday, which is becoming a bit much.

Ah well, it could still always be worse I could have no head instead of a constant headache! 😉

I had my vitamin D injection last week. Straight into the muscle in my arm which I was not expecting! I’m thankful it wasn’t my bottom but jeez I nearly hit out with surprise! Much like a tetanus shot, it wasn’t painful for long but I did have a dead arm until the next day. I’m due for another one next month which I will definetly have, I’m really hoping will help my pain and muscle swelling.

Life continues to plod along otherwise. I had a letter on Monday apologising for taking so long making my pip decision but I will have one soon. Why they bothered to send me that letter in the first place I have no idea! Unless it’s to back themselves up by saying it’s taking time but they informed me it would be.. In my eyes its a pointless waste of paper, envelope and stamp!

I am planning a night at my parents soon. My father bought an electric orphapedic bed for use at their home, so I will look forward spending time with family and messing about with the bed! I know full well I won’t be able to stop myself folding, unfolding the bed via the switch.. I may be an adult but the child in me will never disappear! 😀

Results

I’m very pleased to say I had my results and apart from my muscle swelling off the chart and really high white bloods cells still, they all came through clear! 😀

I phoned the hospital who told me my results were through but they couldn’t tell me them, it had to go through my doctors. So I phoned my doctors and got them to phone me yesterday morning, with the good news.
I am relieved, and now can look into pain/muscle meds to hopefully help me. I am researching different meds, it’s crazy I have to do this but if I didn’t I wouldn’t get them.

I’ve been rather unwell this week, I hurt from head to toe, my skin feels so tight and unbending I can hardly move properly. I’m still half blind too and the two week pounding headache continues.

Things are difficult at the moment because of this, any movement makes me bite my tongue to stop the urge to groan aloud due to pain. My constant headache and eye sight is making it incredibly hard to think or read, hence no post yesterday.

I was talking with my father and he was saying how there must be something they can do, they can’t just leave me this way. But the sad truth is, they can and will.

This doesn’t mean I will give up though. No way. I will research all drugs, treatment, foods etc that have shown to help and decide which ones to discuss with my doctor. I have no specialist appointments until late September and there is no chance that I am going to wait that long for some kind of relief.

Chronic conditions are so neglected, patients are neglected and told ‘there’s nothing we can do’ . This isn’t good enough and I refuse to be told there’s nothing more they can do. I will bug and bug them until I am satisfied all that can be done will be done.

My body may not work properly, my brain might be confused and stutter, I may be bed bound but I will not be left to rot in my bedroom. I will do and try anything at this point, even if that means using valuable energy and body functions.

I’m exhausted just writing that! Ha, but hey it’s worth it. At least my hands are being kind to me at the moment, I can still type 🙂
I am very happy about my results and feel positive about getting the help I need. My doctor is brilliant, I am incredibly lucky to have her and she is always happy to help in any way she can.

In other news, my sons girlfriend had her article published in the speakers corner section of our local paper. I will retweet the post on twitter, I encourage you to read it! It’s brilliant, and I’m not being bias 🙂 it may be a bit odd to say but I am very proud of her. She is an incredibly smart clued up 19 year old, and her writing skills show this. You’d never believe an adult if later years hadn’t if written it. My mum bought a few copies and gave one to me, it’s definitely one paper I will keep! 😀

Brain stuttering

So it’s the start of a new week, let’s hope it’s a good one full of nice surprises for all 🙂

My bed rail has not long been picked up, I hope it helps someone. The guy who picked it up was the same one who delivered all my home aides and put together my bath seat, so we exchanged pleasentaries and I’m sure he will be the one delivering anything else I need in the future.

I have a load of clothes staring at me waiting to be sorted out. Well they can wait, I’m resting up before even attempting to tackle the piles, I have to keep a hold on my ‘trying to sort everything’ trait or I’ll crash. A huge part of me is yearning to get stuck in, the part that has always been a good trait before as I used to be like lightening sorting and clearing up. Alas, this trait is now one of my worse as I need to ignore it and keep retraining my brain to my new position and capabilities in life.
It’s frustrating but no way near as bad as the crash I’ll get if I don’t heed cautiousness, so I just have to keep my brakes on. It’ll be worth it in the end.

I forgot what a fork was again the other day, and today couldn’t remember what a towel was. This happens frequently. I was putting clean towels aside and I picked one up and could not remember what it was, my mind was a total blank. I then started running through what it did in my head, it’s use, colour, scenarios when you use one but the word would not come. My brain started stuttering, my head started to ache and all I could do was try to break my thoughts down into words and keep picturing what a towel is used for. After 20 minutes I found the word and was jubilant, I might of even said ‘ ha in your face towel!’ Might of.. 😉

It’s odd when this happens though, and it happens a lot! It’s as though my brain has wiped all knowledge of the name or use, or both on bad occasions and trying to remember gives me a terrible headache. I literally have to sit, calm my thoughts and run through anything I can remember about an item and if I’m lucky it’ll come to me eventually.
This was put down to ‘brain fog’ first if all, a phrase used in fibromyalgia and m.e but as it’s become a lot worse and I have other issues ie ‘head seizures’ my doctor is waiting on my MRI results to see if it’s due to anything else.

Maybe it’s just old age creeping up on me, or at 33 my brain has decided it already knows enough.. That’s it, I could well have ego brain! I just thought that name up so my brain can’t be that bad! 😉

Tea, more meds and I need to start slowly sorting my stuff. Trying not to get distracted by items I find, which I have a habit of doing.. I’m standing ( well crouching) firm and soildering on, nothing will stop me! Apart from the shiny object I can see through the carrier bag.. Oh and maybe an earring I think is in there, but have lost the other one. Or it’s in another bag.. Hmmmm
😉

Hazy times

I spent most of yesterday in a haze of headache, sleeping and head lapses. Feeling as though everything was happening in de ja vu, it’s really not a pleasant feeling.
Today I still feel hazy, everything seems unreal and out of synch.
These head lapses make me extremely exhausted after, very tired and unable to concentrate. My MRI scans can’t come quickly enough for me now, I want to know if it is some kind of damage or the M.E doing this.
It’s a really sunny day here, with my electric blanket on too im really hot.. But needs must, I cant move well without this constant heat.
I’m planning to visit my parents on Tuesday, it’ll be the first time I’ve been there since the beginning of March. It’s actually the last time I went out to something that wasn’t an appointment, I only just realised that! I do love my parents house, it’s the one I grew up in my parents have lived there for 43 years, it holds so many memories. Since my parents have retired my mum has been sorting the garden out, planting flowers, getting it tidy for her and the family, and we have a very big family! The garden is over 100ft, very hard to keep it tidy, my dad does the weeding etc and my mum sorts the pots, plants etc. She suffers from arthritis, has had to stop work because of it and struggles to do things. But the garden has become her focus and she really enjoys it, it’s good to see her do something that makes her happy.
I’m really really hoping that I’ll be able to go there, I will get to see my sister too which is an added bonus. Fingers crossed, touchwood and bundles of lucky heather I will be able too and spend a few hours with my mother, father and sister and sit happily in a house that was home for so long and always will be.

The point I knew I was unwell and how chronic condition sufferers are mistreated.

I remember the moment I realised something more than Endometriosis was making me unwell.

It was March/April last year, I am terrible at remembering anything, and I was due to meet a friend for coffee. I wanted to cancel as I felt I had the flu, but had already done so several times so I got myself ready and took the bus into town. I had to pop into a few shops before meeting him so I did so, feeling more and more achey and unwell as I went. I finally made it to the coffee shop, sat down in relief and started catching up with my friend. While I was drinking my coffee my hand started to shake, not just a little bit but full on spilling my coffee everywhere. My friend jumped up and grabbed some napkins and I joked about how I said some things were literally getting on my nerves. My hand wouldn’t stop shaking for ten minutes and I had to grasp it tightly with my other hand under the table for ten minutes before it calmed to a slight jerky motion. I was fine through the rest of the next hour, apart from the flu like symptoms and after saying goodbye to my friend decided to get the bus home rather than walk as I had intended. I got to a packed bus stop and thankfully put my bags down. I couldn’t sit down as the seats were taken, so I half leant against a wall and hoped the bus wouldn’t be long. I was feeling bad and needed to get home, make the tea, wash clothes, tidy up and go through some history sites before bed. But as luck would have it, the bus was late, very late due to roadworks a mile away. I stood for 25 minutes before I decided to walk home, it was only a 15 minute walk so I picked up my bags that now felt like they had bricks in and got going.

I had been walking for five minutes when I felt the already heavy feeling in my shoulders and back intensivy, to the point it felt as though I had breeze blocks on my shoulders. A massive headache came from nowhere, startling me to a full stop, then the shaking began, in the whole of my body and sweat poured out of me. I knew there was a bench just a few minutes away so I headed for it. My legs got heavier and heavier as I walked, as though I was walking in treacle and started spasming just as I reached the bench and literally collapsed onto it. I was a mass of blinding head pounding, body shakes, sweats, pain, spasming jerking movements and I cared nothing for the rain that had started but was thankful for it. I spent the next 15 minutes trying to control myself, pull myself together and relax. It was during this time that I finally knew something other than Endometriosis was happening to me, never in the 5 years I had it had anything like this had happened. It didn’t feel like my usual symptoms, I was pretty used to them and how to deal with the condition as best I could. This was something totally and scarily different, the symptoms, the way I felt, the quickness and intensity was something I had never known before. That was the moment I decided I would hound my Doctor for answers and not be fobbed off with the poor diagnosis of stress and low immune system I was given in the last couple of months.

It took me a further 10-15 minutes before I made myself get up and start walking home, my one thought was to get home,  I gritted my teeth and to this day I do not know how I managed to walk let alone make it home. The 15 minute walk took me an hour. An hour of constant stopping, dry retching, pushing myself, in agony of pain and burning muscles. I got home, dumped the bags in the hallway and staggered to bed where I took paracetamols, codeine drank a pint of juice and laid down for an hour not daring to move because it sent massive waves of pain through me.

From that day to this, not a day has gone by without pain, burning muscles, spasms, flu like symptoms and new and even more disabling symptoms. They are with me from the moment I wake, I wake in pain and stiffness everyday, to the time I sleep, even then waking me in the night each time I move or even breathe too deeply. I can no longer walk a few metres without fierce pain, muscle tightening, spasms and shakes. The simple act of making a cup of tea exhausts me and makes my hands shake and my heart and pulses pound. It seems absolutely ridiculous doesn’t it, laughable even. But to me and hundreds and thousands of others it’s painfully, destroyingly true. The jibes, comment’s, flippant thoughtless remarks that people make saying in more ways than I knew even existed that it can not be as bad as we make out is not only untrue, but incredibly thoughtless and emotionally painful.

I for one am not an attention seeker, a hipracondrac, liar who is pretending to be unwell to gain thing’s and peoples sympathy. I have gained nothing from being like this, I have lost many many many things and I don’t gain from saying I am in pain or feeling unwell. If I say I am in pain or feeling unwell then I really am, I have an incredibly high pain thresh hold and I am a very private person. Me saying I am in pain is telling people that today might not be a good day, I may need to totally rest up in bed, not be around to talk, message, do the washing, cooking or even manage to get to the bathroom. It is like a warning to people for what they might expect my next few days/weeks to be like, how I will be. All of us living daily with this condition, or others as I am are trying to do this, warn others, hope people understand and don’t mock us or dismiss us and what we are trying to communicate without thought. We are not attention seekers, we are living daily in a world of pain, life changing symptoms, emotionally difficult changes and reaching out to our family, friends, co workers, blog readers, media sites in the hope we will one day be believed and helped to get through the hell our symptoms put us through.

I hope one day to live in a world that not only accepts what goes on for us,  but also we receive the treatment we truly deserve and help get back some of the life we have each lost through negligence and ignorance.