New Year new hope

I had a lovely Christmas and New Year.

It was my sons 21st Birthday a few days before Christmas, 21st!

Wow it made me feel old and genuinely wonder how quickly the years have gone by. 

But I am extremely proud of the man my son has become, and unbiasedly know that he is a man who will do well in life, because he works his tail off now in order to achieve his dreams. 

He is, and always will be the best thing that has happened in my life. 

I was able to go to my parents and have Christmas lunch and on Boxing Day spend time with my brothers, neices and nephews and my brothers lovely wife 🙂 

Amidst the talking, joking around ( because all of us are jokers and cheeky remarkers) and eating I had a moment of feeling like the old me. I stopped and felt so much like me that it was scary but so exhilarating! 

I haven’t felt like that in a very long time, haven’t felt ‘normal’. But with my family, I felt so happy to be there, to see them all and able to join in that I forgot that I am actually sick. 

To be able to talk to my older neices and nephew and see how grown up the eldest neice is becoming, and how clever and cheeky my older nephew is and the spit of my brother! 

I felt like the old me, carefree, happy, jokey, and being silly with my young nephew as I played with his Star Wars figures and discussing how if a ghost tried to drink water it would go through its body, and that zombies eat brains, but not mine because it’s too small.. :,) 

It was good to feel that way, good to actually feel I am still me, that I am still me inside myself and to let that out.. Felt incredibly freeing 🙂 

I felt greatful for the amazing family I have, felt greatful that I could manage to see them, and feel grateful for the genuine love and support we all give to one another no matter what. 

Yes, I am still very ill. Yes, my mobility is so bad now that I lose the use of my legs in a weekly basis. Yes, I am still mostly bed and housebound.

But.

But, it’s the special moments like that which make me feel fortunate for what I do have, regardless of what I don’t. 

That despite how sick I am, I know that I have far more good things in my life than I don’t have. 

That many would love to swap places with me, and experience the love, support, and care of a family. To have a roof over their heads, a child and security. 

To know that despite how bad things can be, I am never truly alone and never will be. 

That, is worth far far more than what I don’t have health wise, and always will be no matter what the future brings. 

🙂 

Crashing Christmas

It’s been a difficult few weeks, well, couple of months to be totally honest. 

I had a massive crash 6 weeks ago, I had lost the use of my left arm and shoulder again and my body was in constant spasm. 

Then I got up in the night to go to the bathroom, and my legs felt like jelly, and really shakey. 

I managed to get to the bathroom, and then back to my room.. Despite the now tingling all through my legs and back. I shut my bedroom door stepped forward and ‘bam’ I went down like a large bag of potatoes! 

I had lost total feeling from my waist down and couldn’t move that area at all. 

I will admit, it was very scary. I don’t often feel scared about my symptoms but this, this was a massive shock and with only my right arm working I felt real fear. 

I was slouched on the floor for an hour, slowly inching my way to my bed by pulling myself with my right hand. 

When I got into bed, I was absolutely exhausted. I reached for a drink and my pain meds and diazepam and tried to relax my body as much as possible. 

About 4am I text my mum to ask if she was up, and she was as she’s a very early riser. I chatted to her on the ‘phone about what was going on and made arrangements to get to her house so I could be cared for until it passed or eased off. 

I was there for two weeks, and I slowly got my legs back to walk. I was cared for so well by my parents and sister, and I am and always will be incredible greatful for them and their total support, help and love. 

Since then I am losing the use of my legs on and off and the spasms, pain  and cramps are in overdrive. 

This flare and relapse has put me back months, I’m much better than I was but my body is screaming at me 24/7 and I feel these symptoms, the loss of feelings in my legs is going to become a part of my illness, as all my other new relapse symptoms have. 

So again, I’ve had to put more measures in place to help me through this and seriously think about my future. Like moving and getting an electric wheelchair after I do so I can not stretch and lose the use of my arms by using my self propelling one. And keeping my mobile with me at all times in case the feeling in my lower body disappears again. 

And with Christmas and my sons birthday just around the corner, I’ve been focusing on getting better so I can enjoy and take part of the day. For my sons birthday rather than Christmas. 

I find this time of year can be very depressing when on social media. All the pictures of Christmas parties, social events, tree and decorated homes. 

Don’t get me wrong, I’m happy they are happy and can do these things. But I will admit that it makes me feel left out, look to the past when I was well and did join in with all these things. 

I’ve only just got into the Christmas spirit, and my son hughly contributed to this by encouraging us to put the tree up together. 

That was a beautiful time, spending that time together,  I loved it and I’m glad we put it up as it does make a huge difference and creates a Christmas air 🙂 

I think that many people who are unwell struggle more at Christmas time because there is so much to do, but you’re unable to do much or any of it. The pressure is huge and others can forget you are sick and assume you will sort a lot, which causes huge strain for our bodies and minds. 

We don’t suddenly become well because it’s Christmas, although I would love that Christmas miracle! 

It’s a day that pushes our bodies to the limit and causes huge recupusions, including  severe flares and relapses. 

I know I have to be extremely careful and not push myself between now and Christmas, because darn am I missing out on my sons birthday and then Christmas Day! 

Pace, pace, pace, pace.. Will be my constant repetitive motto, and being sensible and good for once! 🙂
 

Aftermath

Christmas was beautiful 🙂

Spending Christmas Eve and Christmas Day until 4pm at my parents was so lovely.
It’s very rare I spend that much time with them, it’s been a year since I stayed at theirs.

I had to go to bed quite a few times to rest as I can’t sit up for long anymore, but I finally got to use the special electric bed and boy was it comfy!!

It folds up how you want it and yes I did play around with it, amusing myself by using the controls to lift the bottom then the top in lots of different heights.. I’m such a child sometimes :,)

I was a bit sad that I had to lay in the bedroom by myself while everyone was downstairs watching films, chatting etc.. But at least is made it to my parents and enjoyed as much time as possible with them.

I was very spoiled gift wise, by all my family and my partner. He got me a huuuuge teddy bear! It’s 3ft and is a substitute for when my partner isn’t here… I named him Bob and he is currently laid next to me in bed keeping me company while I occasionally take pics of him eating, wearing hats.. Yes I think I really do have neurological problems.. hehe 😉

I am knackered now though, my body is exhausted and paining badly.
I knew I would be dealing with this, doing so much to-ing and throughing plus extra exertion was bound to put pressure on my body as it’s not used to it.

I was dreaming last night that it was high summer around ten years ago. I was in the park with my son, Mum and Sister which is something that was very common back then.

The park is huge, it has a small football pitch, tennis courts, (that I once played tennis in) assault course, two basketball pitches, two child play areas a school, (the primary school I and my son went to) and still acres of empty park to run around, picnic in. It was this park I myself played in as a kid.

Well, I was dreaming about a summer long ago. Having a picnic under our usual tree, playing football and basketball with my son and sister then booking a tennis session for the next day.

The dream was so wonderful, the sun was shining, we were all so happy, so carefree, I was making daisy chains and putting them on my head as I watched my son kicking the ball around and waiting until it was my turn in goal.

I swear I could feel the sun on me and hear the bees buzzing around, it was that vivid.

I felt the dream start to flicker away, I could feel pains in my back and legs start to intrude into the dream. I was half asleep and half awake, trying to hold onto the dream when I moved my leg in reality which jerked my hip and back into massive spasm and myself into full wakefulness..

And I burst into tears.

Not through the pain, or discomfort but from the dream that I was so happy in and the knowledge I will never enjoy simple days like that again.

I laid in ball trying to massage the spasm out of my back and push my leg into the bed in the hope the pressure would ease the pain and I cried like a child.

Reality against my dream was such a huge difference, which is unusual because these days I tend to dream I’m disabled, it’s now very rare that I dream I’m well and able bodied.
I’m not sure if this happens to other people, that in their dreams they are well or not.

This time it overwhelmed me.
I was crying for the past, the happiness, the ‘well’ me. The knowledge I’ll never be well enough to sit in the park, play tennis, football, sports, walk the breadth of it again. Never move without pain, spasm or limb locking.
Never be as I once was.
The simplicity that was in sharp contrast to the situation I woke to, in rigid pain and body spasm.

I calmed down after awhile but it took some time to lift the horrible feelings of despair. Feelings of loss and how my life and health is now.

It’s unusual I feel like this nowadays, I’ve come to accept as much as I’m able to how my life and body is now. This dream triggered such sadness in me though, and waking feeling like hell was just the icing on the cake.

This last year has been the most difficult of my life, and I don’t say that lightly. My life has never been rose filled or easy, but this year it’s been a roller coaster of ill health, acceptance, self preservation, sadness, despair, hope and hopelessness.

Yet I end the year grateful for all that I have, which overrides what I do not have. Grateful for the people I have in my life, that I can to an extent enjoy life in a simpler but a more appreciative way.

I have no idea what 2015 will bring, and I really don’t want to know. I am safe in the knowledge that I am still here after a very difficult 2014, and if I can achieve that then I’ll be able to get through 2015 🙂

Happy New Year to all my readers.
I wish you a happy, healthier and easier 2015!!
XxxX

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

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.

Discharged

I’d like to start by thanking a few people for their kindness and messages on my last blog. You know who you are 🙂
I appreciated it so much and am touched by the help, I hope to be able to return this kindness at some point. Thank you

So I had my long awaited rheumotologist appointment yesterday and…
He discharged me.

Yup, there’s nothing he can do for me and has said it’s in the hands of the neurologist now.
He suggested the Hospital again but then agreed that it wasn’t really feasible for me to do as a lot of my pain is neuropathic, due to the damage the ME has and is doing to my brain.

His suggestion was, wait for your neurologist appointment and in the mean time speak to my doctor about pain relief.

On the bright side, he could definetely say I have chronic fibromyalgia.. Yeah, cheers then doc!

So, back to square one. Though I do have some meds to discuss that someone put forward so I will do that with my doctor on the 8th October.
I also need to stop my morphine.
A, because I am taking half a bottle before I feel anything, and even then it isn’t dampening the pain.
B, The amount I’m needing to take is way too high for my liking.

My body must be quite addicted to it by now, something I don’t like at all! I shall discuss this with my doctor too.

The pain is still bad, the trip to the hospital made it even worse. It’s not at screaming point today thankfully just shouting point… Aha 🙂

Bright note..

I’m still reading and taking notes as I go 🙂 this is so important to me, especially at the moment when things aren’t great.
I was able to download some great books from a site that was recommended to me, thanks again Fern 🙂

I have them on stand by and mean to get through them one by one after my current kindle book.. If it takes a year I’ll get there! ;D

In all honesty I’m feeling down still, finding things a bit difficult. Constant pain has a funny effect on the mind, as does the lack of sleep it’s causing. One moment I’m despairing about how I’m going to get through each day in so much pain and symptoms. The next I’m Boudicca battling through and knowing I’ll do all I can!
Without the outfit unfortunately, that was one cool outfit she had! 🙂

Deep down I know I’ll make it through, my track record is pretty good but it’s the getting through that’s the testing point.

None the less, I am still counting my blessing and an forever grateful for the things I do have.

I bought a lovely tin of Roses Chocolates, Christmas is definetly on it’s way now they are in the shops! 😀
I am steadily munching through them, eating sensibly in between of course but with several chocolates thrown in.
Just opening the lid smells of Christmas, this makes me happy!

Despite how things are at the moment I can and still have many things, birthdays, family stuff, christmas etc to look forward too and I aim to do it with full gusto!

Maybe a couple of chocolates first though… ;D

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.. 😉