Changes

The last month plus has been a roller coaster of extreme downs and ups.

I’ve been quiet and keeping to myself most of the time because of this.

Health wise I’ve been working incredibly hard on trying to walk more, rest, pushing myself, pacing.

A few months ago I said about being able to read a bit and then had a complete reading block.
Well, I made myself read a tiny bit everyday, and write the it as I was going to try to make it stick in my head. Months and especially the last two weeks have paid off and I am now able to read much more which I am delighted about.

Yes it causes massive headaches, eye sight strain and sometimes frustration because I do forget things very easily. But, I am sticking with it and it is working! As a former book worm it’s so satisfying to be able to read pages instead of paragraphs, and I hope to eventually read as I used to 🙂

Along with the reading I have been building up my strength by walking everyday, no matter how bad my conditions are. Around the flat and taking my rubbish to the end of my landing Shute instead of the one next to me. Well, through this forcing I was able to get to my shop! Across the road! With my stick, and stopping so many times, and retching along the way but I made it! I have a noticeable limo nowadays, caused by my hip and back issues, I’m the pirate of my area 😉 but even with a limp I’m more upright than I was 😀

I was in bed for a few days after, and I find this happens if I walk/push too much. I walk to the Shute and need to rest for the rest if the day. Or walk around the house and need to, and the cramps, leg locking, numbness is still happening. But, it’s a massive achievement to me. Even if I can just get around the flat and to the shop once every few weeks and I’m in my chair for everything else, I feel this is enough at the moment.

I won’t skirt around the issue of being extremely down recently too. I have things going on in my personal life that have been really difficult, and juggling this, my appointments, bills, pushing myself, isolation, friends disappearing, painsomnia, trying to sort home improvements, trying to cope with my health issues.. It has kinda felt a bit much to deal with.

I don’t often get like this, usually I’m on an even keel and bat away problems as efficiently as I can.

I guess the last two years of bad health and all that it has entailed has caught up with me. But I am feeling better than I was and trying to stay on track with everything.

It’s difficult and I don’t like to feel as though I can’t face some days, but I’m aware of this and because I’m aware I can work on it.

I’ll get to my better place eventually 🙂

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! 🙂

Back :-)

It’s been awhile since I’ve blogged, nearly a month which I was surprised by when I checked!

The last month has been one of ups and downs, well days and a few really good days and the inevitable really bad days.

Mostly I haven’t been able to write due to the worsening of the sight in my left eye.
It’s now almost two thirds blindness, and I’ve been suffering with terrible headaches every day, to the point of them waking me.

But I do not want to give up my blog, and this pita will probably take a few days to right but get there in the end 🙂

My legs have also been waking me many times at night, they twinge then lock, and become totally dead.
Massage and heat help to get them moving again but it takes an hour or two to do so.

As you can imagine I’ve not been sleeping well! I feel as though I’m sleep walking through most days, so tired and body weary with my headache blighting me.

I now haven’t had a period for 5 months.. No idea why and I’m definetly not pregnant. I still get the stomach cramps, weight gain and sugar cravings but no actual period. It’s all a bit odd and I’ll talk to my doctor about it next week. I don’t feel more unwell, more pain in my hip and stomach but the bleeding I was getting has stopped.
It’s an odd one that’s for sure!

But, I am not unhappy at the moment, I’ve actually been calmer in myself and more playful in my manner.

My son was off work for a week last week so I got to spend quite a bit of time with him which was great . He works so much that most days I only see him early in the morning or when he finishes at night. So being able to play console games, watch programmes together and talk was brilliant 🙂

One huuuuuge achievement I had last week was having lunch with my mum then doing some Christmas shopping. I am used to my chair now and saw lots of people I know to wave to or chat.
This is a huge achievement and was like a dream come true!

You know how I love Christmas, and with my sons Birthday just three days before, the festive period is my favourite month.

I am just waiting on 2 parcels to be delivered and ill be all ready for Christmas! My house is decorated with lights, tinsel and christmas items for the first time in two years! It may be a bit OTT but I do not care! I love it, and it makes me so happy 🙂

I hope all is well with my fellow bloggers 🙂 I aim to go through everyone’s blogs and catch up with them and you 🙂

Flu

Apologies for my absence from everywhere, I’ve the flu and its hit me pretty badly.

I’ve been warned about catching bugs, flus as it will make my conditions go crazy.. Unfortunately both my partner and son have been ill so it was inevitable I was going to catch it. Being housebound lowers the risk of catching germs off people, but your nearest and dearest cannot dodge flu catching and once the germs are in the house then the lil mites get everyone they can.

I spent two days hardly able to move or function, I’ve had flu before but this is beyond any flu or infection I’ve experienced.
My usual aching limbs doubled in pain and burning, even my finger tips hurt. Headaches, shakes, sickness, incredible pain, my memory became worse.. Something I didn’t think possible!

I’m pretty sure I have another sinus infection or infection somewhere as I can feel my body protesting against something. That may sound odd, but I know the difference between not having one and having one. My Tempreture is constantly between 82.2 and 82.6 which is making me sweat buckets.

All in all, I am not too great at the moment and now think next year I will have the flu jab! I am against them usually, have declined one for years. But now, I know my body couldn’t cope with another bout of this flu, it’s not pretty!

I am due to have my vit D injection and smear on Friday, both I’m late for.
I’m hoping the vitamin D will give my body the boost it needs and my smear will be clear.

It’ll be difficult to get to the appointment but I’m going to have to as I’ve had some ‘womens problems’ for awhile that can no longer ignore. My friend has offered to take me which will save a lot of hassle.

I’ve been having erratic bleeding, my periods have stopped and I’m having terrible stomach aches and limping with the pain in my back and hip. My old symptoms that I haven’t had in quite awhile.

To be honest, I am concerned I have might have an infection in my womb or another cyst, I don’t like the symptoms I’m having and the loss of period. I’m definetly not pregnant, but I’ve never had my periods stop before.

My doctor has said my body is under extreme stress with being so unwell recently, that the stress of that and the mental stress could be stopping my periods. But I need a smear ASAP.
I’m keeping my fingers crossed that these are the reasons, I’d rather it be stress and depression than any form of cells, cysts or infection. I don’t think my body would cope well with the operation any of those things would need.
Fingers crossed and gypsy luck I’m ok! 🙂

In better news..

My christmas tree is up!

Yes, I know it’s only October but I put it up at this time every year. And it gave me a lift and happiness I need at the moment.

My sons gf is home on half term from uni, and my son and her helped put it up and it was so great for us to do together. I dragged my fluey self downstairs and I’m glad I did. We were messing around with tinsel, joking and laughing happily as we decorated the tree. Now it’s twinkling in the front room, bringing a smile to my face each time I see it 🙂

That alone is worth having our tree up. Happiness can be found in the smallest of things.. and 6ft christmas trees ;D

All about… me :)

For another change I thought I would talk about and show pics of me from my past.

I haven’t really given much background on myself, snippets here and there but the older I get the more I look back, I think being unwell makes you look back more often too.

I am the fifth of six children, all from the same parents no step. I have four older brothers and a sister 17 months younger than me.

Along with my parents, and the several dogs we had over the years it was a very manic, no personal space, boisterous, noisy but happy home.
Luckily we had a three story house and 100ft garden, where my parents and sister still live, so we had room to play, fight, move about without it being too crowded.

Having four older brothers did create a lot of teasing, jokes, being dared to watch scary films etc.. which I think moulded my character a lot. The traits of standing my ground, not easily scared, my humour, the standing up for myself and others.
I didn’t grow up very girly, I played football, cricket, made dens, but I still had Barbie dolls and have a memory of washing my dollies clothes and hanging them on our washing line as my Mum hung our washing.

We were not rich, or well off. We never had spare money and were lucky to have enough money to pay the bills. We grew up with no central heating, we relied on three coal fires and in a three story house you can imagine how un practical that was. In the winter it was freezing, and I mean so cold you could see your breath when in bed.

I have so many happy memories though, toasting bread in front of the fire, laying against our much loved and still missed dog Kano as I read and wrote stories. Playing cards, star wars figure games with my brothers. Playing practical jokes on each other, being teased but always knowing my brothers would and did fiercely protect us.

The one thing we always had was food. My Mum is the kind of woman who will not let you leave her home without haven eaten something or taken food with you. God knows how she managed this with so many mouths to feed, I know she went hungry many times so there would be enough food for us children.

This resulting in me being tubby.. well overweight as a child.

I matured at a very young age, physically as well as mentally. I was not a pretty child, I had big front teeth, wore glasses, was tubby, clumsy and wore baggy clothes to try to hide my chubbiness and maturing body.
This is me at 7 years old…

It took having my son to lose weight, which is unusual. I was 12 stone before pregnancy, 14 half stone after pregnancy and within six months was 9 stone, which over two years became 7 stone which was way too thin.
This is me at 15 on my sons 1st Birthday

From having my son, I changed my life around. I was a little wild before hand, never in school, hanging around with older and wrong people. I have no doubt I would not be here today if it wasn’t for having my son, I was on a slippery slope that could of only ended badly for me.

At 15 I was a Mum, working as a cleaner, in school and college. They have a brilliant school for young mothers in Bristol, where you take your children with you as you study. I have recently looked it up and it now offers 6th form and university level courses. I haven’t visited for a few years and kept meaning too, but the last two years have made me unable to do so. I plan to get in contact with the headteacher soon though. She is an amazing woman who campaigns for young mums and help any of us she can.

Some of my best years were spent in that school, I still miss those days more than I ever thought I would so many years later.

As regular readers know I suffer from Endometriosis too, the last 8 years of my life have been blighted by illness. I was not as bad then as now, and still had the silly side I do now which has helped me through a lot.
Dressed as Miss Christmas 3 years ago

So that is a little bit of my early life I wanted to share with you. I hope it didn’t bore you too much 😉
All of us that are unwell, have long term illnesses, short term, any illness that impacts on us had a different life before we became unwell.

For the people who only see us as we are now, sick, stick walking, wheelchair using bed and home bound need to realise this. That we are people, just like them. We were children, teenagers, adults. With all the past, memories, feelings families, experiences that well people had and have.

We are people, not a diagnosis.

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 🙂

Pain and achievement

I was laid in bed yesterday trying to think about anything but the pain I was in, but then as is often the case all I could think about was pain.

My pain levels are through the roof at the moment, and for the first time in a long time looked on the interweb for any foods I could introduce or new or long standing pain killers I could suggest to my doctor.
Unfortunately I found nothing new, and although I have had many people suggest medical marijuana it’s not legal in this country, only in spray form for cancer and ms sufferers.

Would I take a marijuana tablet if I could? The truthful answer is, I would try anything that would lessen the 24/7 pain I am in.

What a lot of people don’t realise is constant pain is absolutely exhausting. It literally takes away your energy, your movement and causes palpitations. The smallest tasks, such as making a cup of tea can lead to shaking limbs, exhaustion, breathlessness and more.. Every thing you do takes your energy and gives massive pain.

I had a letter from my pain clinic consultant which said she doesn’t think she can help me as my pain levels are too high, too debilitating and my body doesn’t work well with the opiates I am on, ie hardly work.
What she does again suggest is I go as an inpatient to Baths pain management centre and they may be able to help me..

First off, how the heck am I supposed to get to Bath? It’s a 40 minute train journey from here, not including getting to the train station, waiting for the train, the journey to the hospital after the train… Sitting up and being in a wheelchair the whole journey which shakes my legs and back up so much I can barely stand for days.
I don’t want to be stuck in a bed, noise, lights people, bustle around me and a kinda guinea pig they will poke and prod.

Apart from the mumbled, usually a few days..I have been given no real time scale how long I would be in hospital which is never good.

But my options are, I put up with the pain and continue to look for painkillers that don’t make my body scream in pain anytime I move a body part, or I go to the hospital which would cause a massive crash and be in there for an uncertain amount of time.

They’re not good options, and this upsets and angers me.

Because I desperately need to reduce my pain levels but I am now being told my pain clinic can’t help me so I’m back to square one.

So what am I supposed to do? How am I going to live in constant bodily pain day after day, year after year?
My hands and feet are now swollen again and laying down doesn’t do anything but make the whole body throbbing worse.
It’s difficult to do anything at the moment, even breathing causes pain!

I will continue to look on the web for anything that may help me, fingers crossed I’ll find something.

On a positive note, I am extremely happy about something I’m managing to do.

I have been reading, reading!!
I had the idea of writing down what had happened during each chapter so I can look back on it when I forget.
So I downloaded a book and it’s exactly what I am doing, writing as I read.

This is a huge development, yes I constantly forget what the previous paragraph or page said but I can get a memory jolt by looking at the notes I’ve written.

I am so so so happy about this! As I’ve said before I was a total book worm, and not being able to read has been extremely difficult for me.
Reading was always my escape, from stress, problems, illness and life. It relaxes me, makes me feel comfortable and stories, plots, style of writing fascinates me.

So I am escaping the pain for a lil while by reading and I am very happy doing so. It’s good to have something back in my life that I have really missed. Good to feel I am achieving something despite the pain I’m in 🙂

Staying steady

I am happy to say my health continues to stay at a steady pace and not plummeting 🙂

It’s only a week but a week with steady manageable symptoms is the most I’ve had in over a year and a half! It’s a miracle, an early christmas miracle! ;D

Talking of Christmas I am one of those irritating people who absolutely loves christmas and everything associated with it.
My tree goes up on the 1st November every year, and stays up until 3rd January. I love decorating it, seeing it all lit up, it makes me happy.

As a child we were not well off, poor is more the word. With six children and two adults in the house you can imagine how tight money was.
But at christmas, no matter what we were treated, decorated the tree, made decorations as we watched the Charlie Brown film every year.
It was such an exciting time for me as a child, the presents didn’t matter it was the family being together doing things, being happy, silly joking and when very young writing our letter to Father Christmas and putting them up the chimney so in awe at that by doing this they would float to him all the way to the North Pole where he would read them!

To this day I look forward to Christmas, and it was made even better when my son was born on the 22nd of December, Christmas became recreating the happiness, excitement and wonder of it all for him.

I seem to have gone off on a Christmas tangent, apologies to anyone who this is too early for it 🙂

Today I am spending the day resting. I have been doing more recently, cooking, light housework and slowly walking around the house to try to strengthen my leg muscles. My whole body is incredibly weak, my conditions have really taken a toll on it. So I am trying to make a slow difference by walking and stretching more.

But for today I am resting up and not pushing myself. I know from experience that pacing is one of the most important things to do when you have health issues. And I don’t want to go on a mad crusade causing a total relapse.

So being sensible, taking my meds and penicillin, and maybe a lil bar of dark chocolate. Purely for health reasons of course.. 😉

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! 🙂