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! 🙂
 

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.

Changes in priority

Along with long term illness come huge changes in your priorities in life.

Party dresses, handbags, hair styling shoes are a thing of the past and exchanged for comfortable, loose clothing.
Going out to the pub, for a meal, coffee and putting money beside for these events become a yearly event or non event.
Face creams, make up, hair dye, hairdressers, barbers, personal grooming are so non existant that they may as well be a story in a fairy tale book.

Life not only changes but all the little things you did for yourself, took for granted and treated yourself to. It is no longer practical or affordable to do many of the things you used to because most of the time you just don’t care about how you look, life becomes about how you feel. We are not able to spend time dying our hair, creaming our face, putting make up on because our aching painful numb limbs are not up to it.
We are too busy concentrating on walking, moving, wondering how the heck we are going to do the things we are supposed to do when we can barely move let alone perform tasks.

And the strange part is, it isn’t always something we notice slipping away until something prongs us with past memories or routines. It happens over time, slowly but surely slipping away and becoming part of our pasts.

Personally I now live in vests and short pyjamas, not only are they comfortable but easy to take on and off and they keep me cool as I sweat really badly these days.
I now get excited over new pj sets and I mean really excited and I put them on straight away.. Such as my new cow vest and shorts set.. I pretend the cows are mooing.. much to my sons and partners amusement and then offers of a trip to a psych ward..

I live in slippers when I can get about the flat, the soled ones as I find the all cotton ones way too dangerous and I slip in them constantly.
Yet..
I used to live in heels, never under a 3 inch heel and couldn’t walk in flats at all.
I used to be nicely dressed and full make up on every day, regardless if I was out, popping to the shop or in the house all day I was always well dressed and always in skirts.
I used to go out several times every week, for coffee, drinks, or just a walk in the park.
I mouisterised twice a day, bathed one to two times a day, plucked, shaved, dyed and brushed my hair, styled it, changed my clothes twice a day.. I had a thing about that.

I look back as I lay sweating in my Chip N Dale pjs, grey streaked hair coiled in a loose bun, stubbly legs, arms, dry skin,, rashed body and I think..
I no longer care about the things I did for myself, they are no longer a priority for me and I don’t miss it.

My life is so different now, my main concerns for myself is my health [ rhyming as I go 😉 ] and finding ways to still live happily despite my conditions.

Priorities change beyond recognition when you live with health issues, along with the extra money being unwell costs. It is not cheap being ill, your money no longer goes on clothes, self grooming, pampering but house aids, special foods, meds, high heating as we suffer badly with the cold. Electric bills for a heater, electric blanket etc.. Transport to appointments, black out blinds, loose clothing, batteries for scooters.. The cost goes on and on and on.

The one and only thing I do at least once a week is put on mascara. That is the only pampering I do for myself, I put it on for me, my benefit regardless of if I am in bed or not.

It makes looking at myself a little easier, makes me feel that little bit more feminine, more alive. I glimpse a bit of the old me, the past vibrant, go getting, fun loving me.
It’s my war paint, my ‘stuff you’ to my conditions and my determination to get through them.

After all, my life may have changed, my body, my health my priorities. But me, the Stacey inside me that will never give up regardless of how much it costs me personally, never be bested by life and won’t let anything totally eclipse me is still there. That will never change.

Life hasn’t ended, its just different

I was chatting to my friend last night and he was saying how he wouldn’t be able to cope living how I now do. The pain, not being able to sit up for more than ten minutes before I am in pain. The wheelchair, bed bound, now ‘head lapses’. He would kill himself if it happened to him, and how much he admires my strength of being able to cope anf continue as I am.
Well, I wasn’t quite sure what to say to be honest! And being more honest I thought, jeez am I really so bad that he went to the extreme of saying he would commit suicide rather than be like me?
It’s a rather depressing thought, but one I thought about after. It’s not the first time someone has said how they admire the way I cope with things and take the mickey out of myself.
But I don’t think about it, I just wake up and deal with whatever symptoms decide to play around in my body that day. Some days are worse than others, and on really bad days when all I can do is lay in bed, wracked in pain, limbs frozen while others spasm I do think about what the future will be like. How I might not get a bit better and be stuck like it forever. That thought worries me, but then again before I got as unwell as I am now I used to worry about being like I am now. But it happened and hey, im still here and I get through each day as best I can. The odd part is, I’m used to being like this now, I honestly have to really think hard about how I used to be and how my life was. It doesn’t upset me like it once did, rarely when I do look back now and again and recall a certain event, used to have three books on the go at one time do I ponder upon it. I will think about it for a few minutes then it’s gone and I carry on doing whatever it was I was doing.

I don’t think about not coping or killing myself. Im not saying I havent had bad days where I have had enough of it all, im exhausted trying to juggle everything. I have, and still do and on those days I try not to put it onto others and retreat from everything until I feel more positive.
Coping is not something I think about, I’m unwell, I recognize this and just work around it as best I can. I don’t think about suicide, I have a son, a family a partner whom I love and they would be the ones to suffer if I did it. It’s the people left behind that suffer, I wouldn’t feel anything as I’m no longer here.
But I understand so much why people do, the pressure, life change, really bad health, seclusion, mental anguish is crushing not only to the body but mind. Especially as people still dont get the help they need because of the many many doctors etc.. don’t recognise these conditions. Ohh how that gets to me and makes me furious! I had better not go into it as this post will be pages long!
I just go with the flow, and not think about tomorrow until it happens. I dont think I’m brave, or strong or exceptional there are hundreds and thousands of people doing the same as I each day. I don’t feel I am in anyway special, nor that I should end my life. Life is a gift, something I now treasure and appreciate. I have no thoughts of not being here, or thinking that the way I am and my life now is not worth it. Yes it’s difficult, hard, emotionally distressing, tiring.. But to me life is still worth living and I have gotten used to things being this way now.
People who don’t suffer from any illness or disability can’t really ever imagine what it’s like and immediately say they couldnt cope with it. But 9/10 people would think very differently if they were in that position. Until they are, they will never truly understand how life becomes something you appreciate and cherish. I wouldn’t wish my conditions on anyone, but having them has changed me and my perception more than anything else could’ve. It’s easy to be flippant about something you have never experienced, it’s living like it that actually gives you experience and real opinions on the matter. I may be a shadow of my former self health wise but I am still here, still living and still appreciating life. I’m just living life differently, life hasn’t ended its just become a whole new way of living.

Surprises and happiness

I spoke to my partner about the bracelet making last night, we had spoken about it before, and he agreed it was a good idea. We were watching a programme at the time, and he started looking and doing something on his phone. I didn’t think much of it as I just assumed he was on a social network site or playing a game. Until he asked me to take a look and I couldn’t believe what I saw, he had ordered everything I need to start making bracelets! I was so surprised but so happy! So I have the stuff coming next week, so much quicker than I thought as I couldn’t afford it at the moment.
I shouldn’t of really been shocked by him doing such a thing, he is so brilliant, kind and thoughtful and it’s not the first time he has gotten me something so thoughtful. He is always surprising me with lil gifts, flowers things to help make my conditions easier for me. Since day one he has been there for me, and not just gift wise but emotionally and to hold my hand or sit and comfort me. I am going to get soppier , so be warned!, and say I truly do love him for who he is, ans how he is. He makes me incredibly happy no matter what happens to me daily and I feel lucky and so thankful to have him in my life and appreciate him and our relationship everyday.

My legs are better today, I can walk with my stick. I may look like an old woman staggering around but I really don’t care. Im walking and that’s all that matters 🙂 I have managed to get downstairs and I am also happy about that.

I have filled all the home move forms out and joining my son to my tenency so all I now need to do is show id by going to the offices. I will phone them Monday to see if I could have someone do it in my place, today my speech isn’t great so I won’t put myself or another in that embarrassing phone situation! 

I am going to try and continue to rest up and not start doing things because my legs are a bit better. My right arm from the neck down is still really bad and frozen and I might put it in a sling as it hurts having it in any position apart from across my chest. It’ll also help me to stop using it as I again keep forgetting it’s bad until I move it. Forgetting I can’t do things again! I don’t think I’ll ever learn 100% not to do this.

So I am planning a quiet evening watching films with my partner, eating food and snacks and just relaxing. Life ain’t all bad 🙂

Losing time

I spent a lovely evening watching films and eating chip shop and chocolate with my partner last night. It was the first full meal I have eaten in over two weeks and it was lovely, the king sized chocolate bar an hour later was rather nice too!

During the last month or so I have been experiencing more problems with the neuro aspect of my conditions, I think I mentioned it a few blogs back. What I haven’t mentioned is I am having more and more difficulty writing in the correct way and also time lapses. When I write or type I am increasingly putting letters in the wrong order. For example eht for the. I noticed this a few weeks back but didn’t think much of it, I was extremely tired and unwell so put it down to that. Now it is becoming a real problem, it’s very difficult to write then have to correct all the wrong lettered words and miss a lot of them because I can’t always see the words are wrong. Also when writing on a form, I had to completely cross everything out and start again on my home move form which just looks awful. 

The writing I could put up with, it is the time lapsing that is starting to become a real issue and worry. The fizzing in my head is now constant and is now joined by what feels like little electric shocks zapping through for an instant before stopping and it starting somewhere else in my head, say my temple. It becomes worse and I seem to drift off for awhile, just a minute or so but the other day I lost 20 minutes. I only knew how long it was because I was watching a film. I came to and was in a state of confusion about where I was and what I was doing. But the feeling isn’t usually horrible, quite the opposite I feel really peaceful when coming to awareness again. But that is the problem, this drifting into nothingness isn’t normal and the fact that I don’t know where I go, for how long or am aware of where I am when I ‘wake’ is far from normal. I spoke to my Doctor about it on Tuesday and she thinks it may be little fits I am having and wanted to send the Doctor out to me. But as I said to her, still being unwell from the reaction from the antibiotics,sinus infection and devils grip I doubt an accurate diagnosis could be made. She agreed and has asked me to let her know if it is still continuing in two weeks, if it is she will book in for me to see a Neuroligist and have a CAT or MRI scan. 

I haven’t heard of this being a symptom of either M.E or Fibro but that doesn’t mean it isn’t. I have had the fizzing in my head for some months now so maybe that’s all it is, just an escalation of that. I can’t worry to much about it, as it will make it worse, rather ironic really. What I can do is try to see how often it happens, at the moment it’s daily but I haven’t lost more than 20 minutes again. It may sound silly but my thoughts are on my medical assessment and trying to sort everything I need to take that proves my ill health and that of my conditions. I can’t think about the head thing too much because with this assessment thing on top looming ever closer, it will cause anxiety and worry I just cannot have and really don’t need right now. When the assessment is done, then I can fully focus on it but until then I will continue to keep an eye on it and not worry too much about it. 

It’s a lovely sunny day today, which makes a change from the dark rainy days of the last week. It’s good to feel the rays coming through the windows and the birds flying around whistling away. Saucy devils are on full mating season at the moment and I am sure some of the strutting male birds will be disappointed and go home with their wings covering their heads. Poor things, but that’s what life is about, picking yourself up and going on after events that have brought you down. Human, animals, mammals.. we all do it and all become stronger because of it. I have faith that things always become better after a period of time and the past has shown this to be true. I may be unwell, suffering head problems and having to prove my illnesses to people that have my future security in their hands, but I am happy I am still here to see the sun, have the day ahead and be able to enjoy it. No matter what is happening I have that, and I appreciate it all the more because days like these aren’t always possible for me to experience.