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! 🙂
 

Shoo Flu

Yes, I have flu back again if it ever went away, and another sinus and ear infection.

But but but, I want to share some great news before I start complaining.. 😉

My smear was clear! yay!

I am so very relieved, now I know it is my Endometriosis kicking in I can start dealing with it. I can handle anything if it means I am not facing treatment for cervical cells. That would have been really really bad on top of my current conditions.
Yes, it is still not great that I am having such severe symptoms all rolling in with my other ones, it is making me sicker. But, no cancer cells means a very happy Stacey regardless of having to deal with more symptoms 😀

I just cannot seem to shift this flu, I felt I was getting over it on Friday/Saturday but Sunday it was tricking back and Monday morning I woke with my ear stuck to the pillow due to leaking mucus and full of phlegm, temperature, my eyelids and face swollen due to the sinus infection. The pain has become constant and severe, plus the seizing in my neck, shoulder and arm was back.

I phoned the doctor to ask for antibiotics and he gave me more Diazepam too. I cannot talk to my doctor for two weeks so I will have to wait to ask about trying new meds, but the locum I spoke to was nice. He actually asked what I would like, what helps me.. I so wanted to say, I will have two of every med you have please.. hehe but I held back and asked for Amoxicillion instead knowing this antibiotic works eventually.

Why do they make tablets so huge though? It is as though they are trying to prove they are powerful drugs by the shear size of them.
Swallowing is a big problem at the moment as the left side of my neck is frozen, it feels as though I am swallowing a brick! Most of my meds are big tablets, at this rate I will be able to build an internal house at the end of my antibiotics..

My Fathers Birthday went really well. He loved his tablet and is now becoming a pro at surfing the internet! I am so pleased he is getting on so well with it, it definetly keeps him occupied 🙂

I am so behind on everything due to this flu. I need to sort buying the last of my Christmas presents, start getting Christmas food in, sort a delivery to the food bank, pay bills, sort a savings account, my funeral plan,housework, sort new shower, flooring, kitchen wall cabinets and lots and lots more.
I have time for the Christmas food and gifts, but all these little things are piling up and my body is on full strike at the moment. I get so frustrated by it, I would have gotten it all done in two days max before and now I cannot function long enough to dial a number let alone anything else.

I really need to sort something about a cleaner or carer to come in, maybe after Christmas.
I am finding it increasingly difficult to stay on top of housework, cleaning, washing up etc..
My son is more than happy to help, but he now works up to 40 hour weeks starting at 6.30am and there is no way he can look after the house, me, as well as his working so many hours.

I do not want my illnesses to take any more of his time and life than they already have and do.
There is no way I will put anymore onto him than I already do, and I can now get carers allowence so I think I should start seriously looking into it. I have a friend who is carer to his Mother so I have an idea of how it works, it is just being well enough to arrange it all.

I am stressing about everything too much, which is unusual for me. Not being able to do much but be stuck in bed gives me too much time to think. Plus being up most nights too. My brain is trying to kill me with thoughts, ideas and stress!
It won’t win though.
As soon as my eyes go down, my ear stops pounding and my flu dries up I will be back on the ball rolling from one item to another. Maybe a little wobbly on that ball but in the end, I will get off put it away and be able to relax. 🙂

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 🙂