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! 🙂
 

Crash and burn

After a few weeks of better health and growing hope, I caught flu and a chest infection and now.. Well now I am in a major crash and flare. 

It started with a cold, then a virus then full blown flu and chest infection. I hoped hoped hoped it wouldn’t erase all the good my body had been showing recently, but was very sadly wrong. 

I no longer have flu or a chest infection, but I am back to where I was a year ago, in bed, unable to move without pain, cramp, spasms. My body is in constant throbbing ache and my muscles are pulling and burning. 

My brain confusion is at a high, I can’t read or take in conversations properly, I can’t understand what someone is saying, as though they are speaking a foriegn language. 

I can’t sit up without support and my electric blanket for more than ten minutes.

My head constantly aches, my left eye is blind and I had to for the first time ever miss a hospital appointment because I wasn’t well enough to get there. 

It’s all so depressing, frustrating, sad, annoying, maddening. 

I had hoped I’d never get to this point again, that painfully trying to move about holding in the scream of the pain of just moving, and being defeated by my stairs was something that was becoming easier. 

Now, I really don’t know how long this relapse is going to last and I know I have a long hard battle ahead of me again to get on an even keel again. 

The fun of flares and crashes are the constant painsomnia comes back, the not being able to swallow properly. The muscle cramps are a constant companion and my left arm keeps losing feeling on me. 

But, I’d rather lose the feeling than it being in cramp. 

I just feel fed up at the moment, depressed and face the huge steps back into better health that will once again need to be taken. And I wonder, knowing what is ahead, can I really do it all again.

I would rather not of had the better health for awhile, because it’s so much harder to adjust back into this complete bed and home bound state. 

I’ll get through it, because I have to. Because I had enough stubbornness to push and make myself as well as possible. 

It’s just the thought of living like this 24/7 for the next however long is a horrible and frightening prospect. 

One of the worst things is the guilt that I again can’t run the home as I usually do. That my son is going to have to pick up the reins as well as working. My Mother has said she’s going to come do my housework, but she has enough on her own plate and ill health and I can’t allow it. I know my son won’t mind, but I do. My Father has offered to help too which I may have to accept. 

It’s taken me a few days to write this and I’m not even sure I’ll post it. It’s not my usual happy, fighting blog post. But maybe that’s not a bad thing. This blog was started to show the harsh realities of the conditions I life with, and I’d be lying to everyone if I didn’t say things are very difficult at the moment. 

Crash and flare

I’m in a massive flare and crash at the moment.
I’ve been feeling off for a few days and I had a feeling I was going to flare and crash which may sound silly to anyone who doesn’t have chronic condition/s. I noticed my muscles becoming a lil bit tighter each day, my hands and feet swelling in the day and being swollen when I woke. My body felt out of synch, becoming slower and more achey my mind more confused and unable to think properly. I woke yesterday feeling unwell and in a lot of pain, my muscles so tight by the early evening I could barely walk or move. Today at 3am I woke in hell, I couldn’t move for an hour after waking, and when I did move I wish I hadn’t. My muscles are screaming at me, the pain is everywhere and my bone pain is back.

I’m disappointed and slightly annoyed, after a few weeks of being much better my body has whipped the rug from under me and is reminding me that my conditions are always here. The worst thing which overrides every pain, muscle lock, bone ache is disappointing others. I was doing so well, hoping this was a turning point and everyone was so pleased. Now I’m back to square one and I hate that it’s others I am disappointing after their hopes were raised.

I spoke to my specialist yesterday, she has taken me off the pain meds she prescribed and can’t give me anything else until my MRI, x ray, ultrasound and blood results are back. She received a letter from my rhumetologist and wouldn’t say exactly what it said, just that my muscle swelling is off the chart and he’s investigating other possible conditions. I managed to get her to say he thinks there’s something more going on, sneaky of me but her reaction prompted me to do so. After all the letter was about me! I hate all this, oh I can’t tell you exactly stuff.. Um excuse me, he’s talking about me? It’s my body that’s being discussed and it’s my right to know what’s going on. So I have to manage on oramorph and codeine again until my results are through, which will be in a month or so. I have to wean myself off the pain med as my body will go into craving mode if I don’t.. So I can’t take codeine for another week or so and just have oramorph til then… :s

I understand why my specialist can’t prescribe until my results are through, and I need to wean myself off the drug. I don’t blame her, and will even think about her suggestion of being an inpatient to be monitered. I understand but that doesn’t mean I’m happy about the pain that is and will continue to raise it’s ugly head until I get my results. That I’m happy I can hardly walk again or use my right arm properly. This is a bit of a nightmare, which I’m awake for and know it’ll continue for awhile before it fades to a more manageable level.

On a happier note, I have had my owl pendents come through to make owl necklaces 🙂 my partner has bought all the pendents, beads, equipment I have and I still have more to come. I am thinking of selling them and donating a percentage to m.e and fibro charities. I try to donate how I can, giving clothes etc and although it won’t be hundreds of pounds it’ll be something to help aid their research. Also it is giving me something to focus on at the moment. I still have my left arm and half my right hand in use. Until I lose total use of both hands and arms I will continue to make bracelets and necklaces and get around the flat as best I can.

And I have the memories of the zoo achievement to make me smile. That day will make me happy forever 🙂