Nearly Christmas!!

Happy Christmas Eve! 🙂

Regular readers will know I love love love christmas! The fact it is Christmas Eve marks my behaviour incredibly festive and happy!

I am going to my parents for lunch then I’ll be home in the evening. A good friend of mine is taking me and picking me up, which I’m incredibly grateful for.
This is one of three friends I have left, who didn’t disappear when I become very unwell.
Although it upsets me that I’m unwell he goes out of his way if I need anything or to chat. I really appreciate it and although I’ve only three friends left, I know they’re true friends which means more to me than having twenty false friends.

My sons Birthday went really well, I got up really early to give him his gifts before he went to work. He expected to work until late but he had finished by 10am so he got to spend the day split between my parents, his girlfriend and me. We had a lil party tea then take away in the evening. I’m really pleased I got to see him all day on his birthday.
He turned 20 years old, which to both of us seems incredible. Him because he feels old, and me because I have no idea how the years have flown and I now have a 20 year old son!
I enjoyed every day of those years and everyone knows how proud I am of him, and how much I love him.
Being a single teenage mum was the best decision I ever made, and I cherish those years and the ones yet to come with my son.

Health wise, I’m much the same.
But I have finally recieved my neurologist appointment for 6th January!
I’m so pleased about this!
Hopefully I can finally get some answers about what is going on with my brain!
I’m still have ‘fits’ several times a day, loss of vision, memory problems and serious issues with forgetting what objects are, used for, words , mixing sentences up and inability to write properly.

I haven’t been able to speak to my doctor as she was away and then I can’t talk to her for another three weeks as she’s fully booked up.
I need to talk to her about trying a new painkiller that was suggested to me, thank you Fern :), and blood tests to check my white blood cells, muscle mass swelling and any tests to rule I’ve not developed anything else.

Four doctors are now saying they think I’ve been mis-diagnosed and I have MS, due to the severity and type of symptoms I’m developing on top of my usual ones.

I now constantly have the ‘hugging’ feeling in my chest which leaves me constantly breathless and is causing problems with my breathing and all day palpitations. I have also started falling over or bumping into things. My balance which was never great has escalated to feeling dizzy and unable to keep my balance at all.

Whatever the outcome I’m prepared for it. If it is MS then I will cope with it as best I can.
The symptoms are so close to ME that it won’t take much more alteration in my life than it already has.
Hopefully the neurologist will help to clear up this issue too.

For now, I’m happy and excited for Christmas!
Spending time with my family, my partner is going to be brilliant.
It’s not the presents, although it’s nice to recieve gifts 🙂 for me it’s about spending time with my loved ones. Something that I can’t do very often now, and I appreciate the times I can more than ever.

I wish all my readers a very Happy Christmas and hope you can enjoy it as much as possible! 🙂

Positivities :)

This blog post is going to be about the positives I’ve been able to achieve recently.

Regular readers will know how my life and conditions are at the moment, the growing pain, worsening symptoms maybe misdiagnosis.

But no matter what is going on, how unwell I feel at times I have and do achieve positive things. They may not seem massive to some, but to me they’re small, hopeful and helpful events in my life that make me happy and feel a lil better about my situation.

I have been able to cook a couple of times this week.

Plain meals and mostly frozen foods but as I started the week unable to move the left side of my body at all this was a huge achievement for me.

I bought my fathers birthday present early, shhhh don’t tell him but I’ve bought him a Tablet.

Not a medical one 😉

He is desperate to understand and use the internet, but finds a PC or laptop too technical. He plans to buy one in the sells after Christmas, but I know he won’t and spend the money on others as he always does.

He does so much for me, my mum, our whole family and he deserves gold medals. I am incredibly lucky to have such a person to look up to, respect, and be his daughter. So for once he is going to be treated, and I will show him the basics, download apps and get him into the 21st century.

I’ve helped my son wrap some christmas presents this week too.

He has bought everyone’s presents and wants them to be wrapped and ready really early as he is working constantly and won’t have time to do it closer to christmas.
He is doing so well in his job, he is up for promotion again soon, does the accounting, deliveries, sorts orders in top of working in the shop, tills, deliveries.

I am forever proud of him, and happy to help wrap presents and get this sorted for him. He’s so great to me, helps and cares so much it’s a minor help I’m giving. But a big achievement to be able to twist my hands into wrapping style 🙂

I have done washing and made half my bed up with clean bedding! Ok it took nearly two hours but by gum I was determined to do it. Resting in between on the duvet, cushions as I went was very comfy too 🙂

In England there is severe poverty at the moment. It’s painful to see so many made redundant, homeless, not being able to feed their children because they have lost everything and can’t manage on the benefits they’re now on. Food banks have and are cropping up everywhere, and it maddens me that in this day and age this is happening. I won’t go on too much as I won’t hush about my views on our ‘government’.. Ha

So I donated to one of the many many food banks.

I have a lil saved from my back money for disability money and I wanted to give back to people who need it, as I have done over the years and especially struggled the last two years money wise not being able to work.

I will now be donating several times a year, with Christmas coming up even £10 of food makes a huge difference to people and families.

This week I was able to wash my hair and wash at the sink too!

Yes, I am becoming quite adapt at using my right side to benefit the non working left side of my body. I was so pleased and felt so much cleaner. I even managed to shave the bottom part of my right leg.. I look a lil odd with one hairy and one part smooth leg, but who cares! It’s a big achievement 🙂

I also joined Instagram which has opened up another world of communication with other spoonies which is great.

No matter what it is, whether washing a cup up or getting dressed these are huge achievements for us chronic illness sufferers. The effort to do anything is ten times the amount it took before illness struck.
Some days myself and others may only be able to get from bed to the bathroom and that’s ok too.
Every and any task is an achievement, no matter how small it may seem it’s an achievement we should be proud of.

I decided this to be a positive post, and I hope you don’t see it as boasting but see it as little achievements that make me feel I am not just a figure in bed, hidden from the world and life around me, but a person who is trying my darndest to do what I can and fitting my life around my disabilities.

These positive things made my week easier, my symptoms a bit easier to bare and even a lil proud of myself by being able to cook and wash my hair.
It’s the little things that count in life and I understand that now more than I ever did before.

Birthday and testing

I had a very eventful couple of days.

I will start with happy news, it was my birthday on Friday.

The big 34.. Though I really don’t feel any older which is the norm as you get older. Looking in the mirror expecting to see at 20year and instead you’re tracing lines and sagging skin.

I was totally spoilt on my birthday, my partner gave me my presents and card at 12am on the dot and a cake a few hours before.
My mum and sister visited in the morning, laden with gifts, a balloon and cake 🙂 then my brother came round and we all chatted and laughed into between cups of tea. It was brilliant.

I was able to sit downstairs while they were there and I was very pleased by this. They stayed a couple of hours then when they saw I was starting to flag left and I appreciated they did this and don’t ever take it personally. I went to bed and my son came in from work and I had more presents and a card. With a very funny verse inside ending that it was from my ever charming and dashing son.. He has a great humour does that man 🙂

I watched some wrestling with him, then got into bed and stayed there until the evening until my partner brought home chip shop food for me 🙂 I had a choice of him cooking or chippy, I chose chippy and pigged out. Twas gorgeous! 😀

I ended the day by watching a film cuddled in bed.

It was a wonderful birthday, and I was touched by how people put so much effort in to make it so, the cards, presents, and messages I received. Plus my doorbell was changed to the Happy Birthday song by someone, so it played the whole song every time it was rung. I have no idea who did that… ;D

I was struggling with one thing during my day, unfortunately a couple of days before the whole of my neck, both shoulders, my back and my left arm completely seized up. I couldn’t move these at all and it was agony. It happened at night and started with a slight stiff neck which spread very quickly. I was up all night but I waited to phone the dr until the morning and asked for diazepam as it’s what I’ve been prescribed for this before. I hadn’t had it this badly before, not my whole neck and both shoulders, I couldn’t swallow properly.

Anyway, the dr said she was gong to send the on call dr out to me though I protested I’d be fine after a few days on the diazepam. But no, she insisted and the dr came out.

So she came out and was extremely thorough and not happy with what had happened or how my body was reacting to her tests.

She did strength tests, putting her hands on the bottom of my feet as I pushed them. Well, my leg won’t have this and as soon as I pushed they went crazy, jangling, shaking and jolting all the way up my legs and into my left leg too. I looked like some odd kind of laid down river dancer!

She tested my pushing her hands against mine, which had the same reaction. Then as usual after any over use of my body I started pouring in sweat, my temperature went sky high and my body started shaking.

The doctor said she is not happy about how my body is reacting, I am too unwell and disabled for the conditions I have, I continue to deteriorate, she’s very concerned about my condition and I am showing all the signs of MS which I haven’t been properly tested for and should of been as soon as I started showing symptoms two years ago.

Even if it isn’t ms then she believes something else is going on and will do her best to eliminate several neuro and muscler diseases I could have.

So I am having an MRI spine scan, lumber puncture and neurologist appointment ASAP. She’s going to try and push this through and speak to my doctor about how concerned she is.

I got a lil choked up when she said I shouldn’t be living like this, I’m young I should be out working, enjoying life living instead of living as I am.

I really don’t know how to react. I’ve been told over and over I’m deteriorating, I’m ‘too’ unwell, it could be MS, or other conditions.. It’s kinda become second nature for me to shrug it off and have tests etc with no concerete results.

Plus, as I said to the dr, ME is so close to MS in symptoms and saying I am too unwell for me to have ME is derogatory to me and others that have ME.

I appreciate her honesty, her drive to help me and have me pushed up in the queue to see a neurologist. Her opinion that I’ve been lost in the system and not looked after or treated as I should be in terms of not doing tests I should have had. Or support from specialists, ie the pain clinic not helping and leaving me to live in agonising pain.

She’s a brilliant doctor, very stern if you’re trying to fob her off but so nice, efficient and trustworthy when you’re unwell. If she says she’s going to do something, she will. So I await until Tuesday and my phone appointment with my usual doctor to see if anything is happening.

In the meantime the right side of my neck is a lot better, the left side not so much. I’m trying not to dwell on it too much, I’m adapting to not using my left side and moving in such a way I look like a robot… Hehe :)!

It’s odd how you get used to these things, your symptoms and new ones springing up and testing your ability and strengths. I compensate by finding ways of using my right side more, not getting too frustrated by it and making jokes.

After all, fighting against it doesn’t help and if you can laugh at yourself then it makes things that lil bit easier 🙂

Symptoms settling down?

It’s been while since I’ve written, due to the bad vision in my left eye and headaches they cause. But I will soldier on no matter how many days it takes to complete this blog entry 🙂

I don’t want to curse myself, but in the last two weeks my conditions and symptoms seem to be calming down a bit! Even despite my ever on going ear and sinus infection which I’m now on penicillin for a week as the antibiotics didn’t work.
But, regardless of that I have been feeling o.k, no major seizures, spasms and joint locking.

I’m still in a lot of daily pain, but because the other symptoms aren’t as bad I am coping with everyday things better. My son, partner and family have noticed the difference, I am only slightly limping instead of swaying as I walk.

This could be the very long awaited ‘good period’ instead of constant relapse. Whatever it is I am feeling better, happier and more productive.
Long may it continue! 🙂

My everyday life is also running smoothly, touchwood!

My son and I have bought new furniture and bits for our home, and yesterday I ordered my much needed new bed. I’ve had my current one for many many years and it has become incredibly uncomfortable, difficult to sleep on. I’ve opted for a memory foam mattress bed, which apparently are good for chronic condition sufferers.

As I spend 80% of my time bed bound I decided to splash out and get acgood matteress and also storage drawers so there is less clutter in my room, such as duvet covers, christmas decorations, clothes. Having the extra room will be great, spending so much time in my bedroom makes it is important to make it as cosy but as practical as I can.

My friend is putting a shower in for me soon too which I appreciate. It’ll be easier for my son in the mornings, save time on running a bath. And for me it’ll make it easier to wash my hair which is a battle every time I do it. I mostly wash it in the bathroom sink as I can sit on the corner of the bath which helps. But the lifting my arms over my head and awkward position plays havoc on my body so using the shower head instead will cut down the arm strain and spasms I get from over exertion.

I have stopped fighting my conditions and am now working with them.
I know my limitations and I am now very aware that the energy I used in fighting could be used in bringing more practical about my conditions and their effects in me.
If I can’t do something then I can’t, I’m slowly but surely accepting that. If I find something difficult I try to look from all angles of the problem and try different ways of making it easier to do.

Thinking about it, this could also be contributing to my improvement, the presence of better energy. I’m not pushing myself, raging against my body or mind. I’m much more relaxed and practical now and it seems to be helping.

I’m still not sleeping well and this is a real pain, but I’ll eventually crash and sleep the day away. Until then I will continue to help myself and conditions and hopefully I will stay at this level. Fingers crossed and a lil gypsy luck I will! 🙂

Gastric flu

I am now over the worse of gastric flu.

It knocked me for six, I started feeling a bit of on Wednesday but thought it was the chip shop food I had eaten as I am now not used to such greasy and huge positions of food.

Friday night saw me being constantly sick, I had sweats, shakes, massive temperature and felt in a lot of pain. I spent Saturday and Sunday being sick, I couldn’t even hold water down. I was bringing my meds back up which caused my pain and conditions symptoms to rev up. I felt better by Sunday night, my sickness calmed down and I managed to drink a cup of tea without feeling my body rejecting it. Ohhh that cup of tea, ’twas like drinking paradise! 😉

While I still feel sick, shaky and weak I am much better, touchwood! My sister was also unwell, and seeing as we hadn’t been in contact I guessed it was a bug going around. I’ve been warned that any bug or illness going around impacts on you much more when you have chronic conditions and I certainly believe it now!
But there’s always a silver lining, not being able to eat for days has caused some more weight loss. I’m happy about that! The bug wasn’t worth the rapid loss but hey, at least I got something from it 🙂

My Mum is due to visit me today which will be nice. She’s been rather unwell herself recently, getting adjusted to her rheumatoid treatment and symptoms. We chat at least twice a day though, and do have a close relationship. It’s become even more so since she’s become unwell, we both have similar joint problems and can completely understand what the other is feeling and going through.
She’s had to give up work because of it which is difficult for her as she’s always been pretty independent. She’s keeping as active as possible though and there has been some improvement in here hands becoming less swollen which is great.
We will gossip and drink tea today, and I guarentee she will bring some kind of food to eat! Bang goes my weight loss.. 😉

I also have a phone appointment with my doctor today when I plan to talk about a few things. One is what I can do about the muscle swelling my blood tests showed are still off the charts. I want to discuss what I can do to try and help this. I have tried all the different natural foods to help it but to no avail. My thinking is the swelling must be causing me and my body a lot more pain and symptom escalation than normal. I can’t take ibobrufen or aspirin as I react badly to them but there must be something I can do. She’s usually pretty good so hopefully she can come up with a helpful solution 🙂

Hearing and seeing the world enjoy the weather

Hmmm, well this post may be a lil different than usual but I need to get it off my chest and know that most people with chronic condition/s will understand.

Summer is upon us. Here in England it has been scorching for a couple of weeks. All I have heard and seen via social media, outside and from talking with people how hot it is and how they love/hate it. There’s a huge diversity between the love and hate, yet they have no choice but to go out in it.

This is the first summer I have been fully unwell and housebound, and I am finding it a bit difficult.
I want to be outside in the sun, not directly in it but to go to the harbour side, sit outside a pub, meet family, friends go out with them and enjoy the long days and get a lil tan. But obviously it’s no longer an option and I have to say I am sick of hearing how others are doing all I want to yet complaining about it.

Does that sound harsh? Yes, maybe but it’s true. It’s not so bad in the winter, no one is out, there are no fetes in the park across the road, none of your friends meeting to sit watching the boats, world go by, no music festivals in the park, no outside unless you’re hurrying to a destination to get inside into the warm. But this total isolation indoors has been very difficult for me, and I didn’t expect it to be.

I’ve never liked the heat and was always complaining about the scorching weather, having to be here, there, everywhere in it all the time.
Now I wish I had the option. I wish I could complain about it, be searing hot, but be outside none the less. For the first time in many months the urge to walk, be outside has been overwhelming and I have felt myself become down about the whole thing, despite my usual resilience to unhappy thoughts and feelings.
It’s really difficult to see people via pictures, statuses not only enjoying themselves but their lives. To be at the beach, the park . Even just walking, something that is becoming more impossible for me to do. I want to feel the sun on my skin, my body as I walk, i want to be able to go out by myself and not have someone push me.. To be alone and sit and watch the world go by as I used to. To sit under a tree and read a book as I used to. To go anywhere alone, to be free and feel the freedom of walking.

I have been very unwell for the last week, and at times I haven’t been aware of what time, day it was just getting up to take my meds, eat and gratefully fall back into a fitful but mostly pain free sleep. I have welcomed sleep this week, it isn’t as painful as being awake, moving, trying to think clearly which I haven’t been able to do much of.

I woke yesterday with the clearest head I have had in a couple of weeks and felt I was turning a corner. For a few hours I didn’t feel the exhaustion of my body, the pain was bearable and I felt optimistic. Then by 1pm it kicked in again, the mind numbing, body paining every cm of my body feeling as though I was slowly but surely crumbling from the inside out. I took all the pain, muscle meds I allow myself in the afternoon and gladly crawled into bed and shut my eyes, happy to shut everything out and fall into blissful, undemanding sleep until the evening.

I am very pleased that my head is clearer, even if my body is still being annoying.
It’s very difficult to talk about how crappy I am feeling about the inability to go out. I don’t want to make my nearest and dearest feeling bad or defensive that they have the option. It’s not that at all. I’m glad they can go out, I wouldn’t want anyone to feel as though they couldn’t in case it upset me. It doesn’t upset me at all. It’s my own inability that is making me feel crappy about it, that I feel very isolated and as though I haven’t adjusted to the summer as well as I thought I would.

I am very surprised at how I feel, I thought I was past all that. The being mostly housebound was something I had accepted. And it is, but the recent weeks of sun and only being able to watch others being out in it, or told about it has been very difficult for me. And knowing that this is probably how it’s going to be for the rest of my life, the non summer activities, is something I am going to need to accept. And I have no doubt I will, but everything takes time and by next summer I will have hopefully adjusted.

Water issues

I am going to be very honest in this post about the trouble I have urinating. I put a warning here for anyone who isn’t comfortable reading about this to not go any further.

I mentioned awhile ago I was having trouble emptying my bladder, now this issue has become a lot worse. I have no idea if this is ‘normal’ for other fibro, M.E patients but I really would be interested to find out if anyone else is going through the same thing.

I cannot urinate properly at all, and it’s now taking four/five trips to the toilet to empty my bladder. I can sit there for ten to thirty minutes feeling my bladder is going to burst but I cannot go. When I do go it’s a tiny amount, and the constant trips to the bathroom continue to be like this until my bladder is empty. It’s causing pain in my stomach, bladder and side as I constantly feel I need to urinate but it just won’t happen properly. Not to mention the energy I am using up getting to the bathroom and back. I have mentioned this to the doctor and my specialist, and they give me constant urine tests that come through clear. So it’s definitely not an infection doing it. I am starting to wonder if it’s connected to my conditions or it’s something else. I was thinking it could be my endometriosis but it’s been months now and way before it started playing up again.
I am at a total loss at what to do to help ease this situation. I will again mention it to my doctor on Friday when I have my phone appointment with her and see if she has any ideas. I really hope she does!

I was up most of last night with my nemesis painsomnia. It’s been a few weeks since the pain has been that bad, I was shaking and retching purely due to the severity of the pain. I will admit to bring disappointed this happened, I has hoped they were a thing of the past. I had been paining all day which isn’t unusual, but the pain hit like a punch in the stomach, quickly and with no warning. The pain is easier today though and I’m doing nothing to aggregate it!

Apart from that and my usual daily symptoms I am still feeling better. My neuro meds have made a huge difference and I wish I had been put on them months ago instead of having my old ones higher end to maximum dose. But hey, it was trial and error and I’m just glad I am on them now.

I phoned Atos yesterday and was told I could have an appointment next week, at there offices. I explained it was put down for a home visit and he questioned why and tried tripping me up about my doctors appointments, ‘how did I see them then if I’m mostly housebound?’ When I said my doctor comes to see me he soon changed his tune but his yeah yeahing annoyed me.. So I started saying it back and he stopped doing it.. Mean? Nope just standing up for myself, well laying in bed but the quote still stands 🙂 so he took my number and said I would hear from them in the next few weeks, which I really hope is true but if not I will be phoning in two weeks time to check. They are fed up with me calling every week asking about my claim, but I’m fed up of them taking five months to give me an appointment. It’s ridiculous and I know so many people who are waiting for much longer than I have. I wish I could go out to work, I don’t want to be like this I would be totally well again if I could but that’s not going to happen any time soon. I don’t like being made to feel I’m ‘scrounging’ as I’m not, I just want them to get off their backsides and do something. Here’s hoping!

Nearly the weekend :)

I woke with a jolt this morning, one minute I was dreaming about being on holiday with my family the next I was wide awake and confused as I was still in a dream state. I laid there for a few minutes coming to my senses and for getting I had woken with a jolt went to get out of bed. I then realised why I had woken so ubruptly, I had massive back ache that shot a jolt of pain through me as soon as I went to sit up. I was half in bed and half out of it, waiting for the pain to subside as I wondered if I should get up or lay back down again. Well, my bladder won that one and I decided to move as quickly as possible to minimise the pulling pain, I did so and nearly fell over due to the intensity of the lightning like bolt that shot through me. Added to that I also woke with totally stiff hands that wouldn’t bend and I won’t go into detail on how my bathroom visit was, but just say that it took much longer than usual and I could of won a prize for the contortion act I did while on the toilet.

Months of no major symptoms of Endometriosis and now suddenly it’s back with avengence. The back pain is a big part of it, as is the pain in my pelvis that is currently causing me to limp. I had a very bad infection in my pelvis which was brought on by treatment and because I didn’t realise I had an infection until I had a massive bleed one day it went undeteacted for three weeks. Slowly spreading until the treatment was far worse than the cure. My pelvis has never been the same since, and I used to suffer really badly with pain, limping, bleeding backache until my ME and Fibro conditions took over and pushed it in the background. Now not only am I having terrible back and pelvis pain but I am bleeding constantly, sorry for that if squimish guys! It’s as though now my leg locking has eased up the Endometriosis has decided to rear it’s head, not gently but straight to the worst symptoms. My body is well and truly messed up inside, I do dread to think how I will be in 30 years time if it’s as bad as it is now. I guess only time will tell, literally!

Today begins the start of a long weekend spent with my partner. He works such long hours in the week, and as we don’t live together week days can only be a few hours at a time spent together. Which is still great, but this weekend is totally ours, neither of us have to do anything, no commitments etc so it’ll be lovely to have time together until Tuesday. It will be our year anniversary in a couple of weeks time, which has gone incredibly quickly. It is the longest proper relationship I have had, and by far the best one too. So much has happened in that year, and seeing as I became extremely unwell two months into it we seemed to have managed to get through it and any other things that have cropped up. We wont be doing anything major to mark the day, just spend what we can of it together. Which is all that really matters, fancy restuarants, gifts, are o;k but I have never been materialistic. To me spending time with him is far more important than any gift, money can’t buy time, togetherness nor love and that is what our day and celebration of the year will be about. 

🙂

 

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.

 

 

Staying honest with myself and others

I am not in the best of health or mood today. Yesterday was spent being sick, hot and cold shivers, massive headache, high temperature and body aches that physically made my limbs jump and tighten. The symptoms eased off in the afternoon but by 4pm they were worse than before. I seriously considered phoning the Doctors but again, I know there’s nothing they can do as it’s the sinus infection and Devils grip making everything worse and the M.E and Fibro symptoms escalate. I don’t want to go through the rigmarole of anyone examining me, I can’t stand to be poked and prodded at the moment with my muscles and body hurting so much. I nodded of around 4am this morning up every hour or so as every time I moved it jolted me. I feel exhausted today, but the sickness seems to be going, touch wood, and I am thankful for that.

I was going to brush over how I am at the moment but I thought, no, this is an honest blog about the realities of the conditions I have and I need to be honest. How are people ever going to understand unless there is honesty, so I am sat writing this with two fingers because my right hand has decided to tighten up and only give me those fingers and a working wrist today. Which didn’t surprise me, I guessed some part of me would freeze or tighten today due to the pain and so far thankfully it is just my fingers, right shoulder, right side under my chest, top of that arm and my feet have swollen making my veins look like rivers outlined on a map. My temperature is a steady 37.3 which is better than the 40 last night. I haven’t been sick yet, my limbs aren’t shaking, just the back of my head is throbbing and my face, and not my whole head like yesterday either. These symptoms may again escalate today, but for now they have eased off and I am grateful for that.

It’s odd how you begin to be thankful and grateful that certain things aren’t so bad, when really the fact we have them would most likely send a person not having chronic conditions into a panic. It seems ridiculous that I am grateful for not having the symptoms as bad as yesterday yet, but I sincerely am. The days I wake being able to move my limbs with only pain and some limb freezing, to me is a good start to the day. To wake without pain in the nape of my neck, shoulders or my legs and feet swollen is a good day. I have become grateful for these things because  I know it could be a whole lot worse and am cheered by the non event of these bodily symptoms. It actually puts me in a good mood and I am able to think of what I can do in the next hour with the absence of them, never thinking about the afternoon because I have no idea what I am going to be like. Symptoms and body movement can change hour by hour, I could wake not being numb in a certain body part, but two hours later I can be not only be numb but spasming too with a massive migraine. There is no planning or thinking ahead with M.E and Fibro, no being able to think. oh I will put the washing on this afternoon because by the afternoon it just may not be possible. That is hard to come to terms with, there is no serenity, no planning, no making decisions, just the then and now. This is what Doctors should also tell us about, the truth of there being no planning being possible because of your body. You no longer control your body, your body controls you. But instead we have to learn the hard way, which is harder because at first you haven’t a clue whats going on and you push yourself then end up relapsing for days/weeks. Not understanding that the simple act of putting the washing out, cleaning the bathroom was too much for your body and it has shut down. It sounds ridiculous doesn’t it, that such simple things can lay you in bed for long periods of time, and to me it felt ridiculous so I just kept pushing, relapsing, relapsing and pushing until one day I did fully realise it was true, no matter how ridiculous it sounded.

I will not be doing it today, that’s for sure! My body is on strike and refusing to act in a manner that is in any way ‘normal’. I am going to rest up, try to not make anything worse and cope with my body as well as I can. It’s frustrating, difficult, lonely and darn right annoying, but it’s for the best so I just need to get on with it. I am sure there’s a film I haven’t watched 50 billion times over somewhere… 😉