Waiting on my specialist

Yesterday continued to be pleasent. My son bought a table and chairs set, and I had my first meal sat at the table with him yesterday.
I have missed not having a table to eat at when I can, most of my meals are eaten in bed. So sitting at a table to salad and chatting with my son was brilliant, it’s the moments like that which makes the whole day brighter 🙂

Last night was a bad one pain wise. It had been niggling all day, but by 8pm it decided to rev up the fun! I didn’t sleep until 4am ish and I’m tired and a tad irritable on top of the pain. I certainly wasn’t impressed with the intense pain, but and at one point I recalled a programme I watched as a kid, someone chopped off their own leg because they were in so much daily pain they couldn’t cope with it anymore. Of course my brain then went to ridiculous imagination mode as it tends too and I wondered if I would ever get to that point. How I would manage with no legs, as it would have to be both. And would I stop there or start hacking at other areas, my left arm, right hand and how I would make a cuppa tea, get to the bathroom, down the stairs. In the end I imagined just having a torso and head, though I’d cut the pain and neuro damage parts out of the brain.. I got the giggles at that part, imagining my self with half a brain showing through my head.. Much like Ray Liotto in Hannibal.
I decided to stop that kind of thinking as it wasn’t helpful, but the giggles cheered me up and distracted me for a bit. A friend once said to me my imagination would lead me to the money or prison, neither have happened yet but you never know ;,)

I have an appointment with my pain specialist later today, I will discuss what other pain meds I could try because they don’t work at all again. I even upped the dose last night and still nothing. It again feels as though my bones are aching, along with my usual pain. I’m sure something else can be tried pain med wise, and my neuro meds are continuing to help my seizures become less often throughout the day which is great. So half the new meds are working is good news 🙂

Not too much planned for today, I’m not able to walk very well and my muscles are all really tight. I can’t take codeine due to the pain meds so I’m just on paracetamol and oramorph to take the edge off. I say edge, it’s more like trickle off. But again hopefully there are other options and I just need to talk to my specialist, very soon.. Very very very soon!

Funeral planning

Some might find this an uncomfortable subject and I am bearing that in mind as I write. But the subject of funerals and how I want mine to be done has been on my mind recently.
Well, for a few years really. When I had treatment for cervical cells was when I really started thinking about it. My son was only 11 at the time and I didn’t want him to be affected more than he had to by my funeral arrangements if my treatment hadn’t of worked. I have had a will in place since I was 17, which mostly detailed custody of my son to go to my parents. I wanted to make sure he was ok if anything did happen to me. Now that’s irrelevant as he’s an adult and I really need to update it which I will as soon as I can.

Anyway, due to my being as I am health wise now I have been seriously thinking about how I want my own funeral to be and what plans I can start making. I want to be buried and I know where, there is a burial ground a few miles away where my family are and my own parents will be buried. But how it will be paid for and arranged is something I am going to arrange. I looked into it last night, and have decided to start a payment plan as soon as I am more financially stable. Which should be by the end of the year. It’s something I want to do, I want to pay for and arrange my own funeral and not put the burden onto anyone, especially not my son. I don’t want him to have to deal with that, or pay for it as it’s very expensive. I will be paying monthly into a fund for it and hopefully I will have many many many years to pay it off. And before I pass on! 🙂

I will feel more secure in myself by doing it, and be safe in the knowledge that if anything did happen to me then at least the burial burden and expense wont be put onto anyone else.

The subject of my death has never been something I am afraid to deal with. I am not afraid of my own death at all, it’s something that happens to us all eventually, nothing will change that fact. I have faith in what I believe happens when I pass on and this helps me to deal with it much more easily. It’s the people you leave behind that suffer, and I aim to ease that just a little for them by doing what I plan to via arranging things etc..

On a happier note, I started my card making and ordered more supplies. I found it extremely relaxing and therapeutic making them. Theyre aren’t works of art, but works in progress. Once I have gotten a lil better at making them I will post pictures, and won’t photo shop them! Promise 🙂

Out of the flat

A later post today as this afternoons trip to the council took longer than I thought. It took 40 minutes to find it plus the half hours drive there and back, which was a pain as it has been a very hot day here and I was sweating buckets in the car. I was dealt with very quickly when I got in there though, and my ID has been approved so all I now need to do is wait the 6-8 weeks for my claim is assessed and I can start looking for properties.

Again I found how nice and helpful people can be when you’re in a wheelchair. I was in a rough part of town, rougher than mine and that’s saying something! But as my friend wheeled me up the slope to the building a group of girls stood at the top chatting and drinking alcohol moved out the way and one even hit the other on the shoulder and said ‘move out the way Sharn’ . I thanked them and got inside where there was a drunk on the phone standing just away from the queue and he apologised and moved to the far corner of the office. He didn’t have to move that far away but the gesture was there. It is nice that people are so accommodating and kind, it makes things a lil bit easier for me as I am still very new to the wheelchair thing and haven’t been able to get out in it much. 

It was nice to get out, but within half an hour the pain and shakes started and by the time I got home my legs were numb, my body in massive pain and my hands shaking uncontrollably. It’s easing off now, after taking Morphine, Paracetomal, Codiene and Oramorph and my muscle relaxants. It still seems crazy to me how such a small amount of time out can make my symptoms escalate so dramatically. The sitting for that long was what made things worse, I can’t sit upright for more than ten minutes these days before my body starts to throb. My conditions have escalated dramatically in the last three months, in that time things like body and hand shaking have become a daily occurrence. Most of my symptoms are daily now, not sitting up, walking is really bad now, spasms, slurred speech, joint locking, my head lapses and fizzing etc… Not to mention my pain, I am now in pain 24/7, I wake constantly in the night due to it along with muscle spasms, limb jerks and locking. Nothing gets rid of it, my meds just get it to a level that isn’t overwhelming. I wouldn’t even say they eased it anymore, my daily pain is 8-9/10 on the pain register Doctors often judge your levels by.

Looking forward I do sometimes wonder if it will keep escalating, and if it does at the rate and speed it is at the moment, how I will be. Three months ago I didn’t think my muscles and pain could get any worse than they were, but I was very sadly mistaken about that. As with my other symptoms, but they too have joined in with the escalation and I am now at a point that I have to accept that I could get even worse than I am now. My Doctor again said last week that I am deteriorating, not only my health but myself too. That my conditions are causing extreme debilitation and I am now no longer able to do simple daily tasks without there being consequences on my body. Payback as it were. That due to the extremity that my conditions are causing on my body, my daily life has become one that I can no longer function as a person should be able too and lead a ‘normal’ life. All rather depressing stuff, yet I am still here and forcing myself daily to do things I know I shouldn’t but thinking, is making a cup of tea really going to cause that much harm?? 

Unfortunately yes it does. It seems crazy, but making tea makes me exhausted, gives me palpitations and my hands shake with exertion. I am now a woman who cannot multi task! Seriously it’s true! Maybe some man has been given my multi tasking power instead.. nah, now I am being crazy.. 😉

As usual my night will be a quiet one. I had some of my card making items come today which I haven’t yet had a chance to look at so I will rifle through the bags soon. The things I can see look really good, and for the price excellent. I got into a bidding war with one of them. I saw that a bag of 50 mixed signs were on £1.00 with no bids so I kept my eye on it. In the last 2 minutes someone bid £1.50, well I wasn’t having that, I wanted those signs and had been watching them all day. So i bid in the last 10 seconds and the other bidders bid wasn’t high enough or quick enough so I won them for £1.70. Mean? Maybe but they were just waiting to outbid me, and it was only because they didn’t bid high enough the second time round that they didn’t win. After all, all’s fair in Greeting signs and war! ;D

 

 

 

Lazy Saturday

I have had such a lazy day! I have spent it in bed, which is far from unusual and watched programmes, eaten toast and drank so much tea I could be a human waterfall… hmm I would rather not though!

All day I have had terrible pain in my chest, ribs, back, shoulder and neck. It’s all the joined muscles and they are screaming at me today. My son brought home lots of deep heat cream though and after covering myself in it it is much eased. It’s the Devils grip still plaguing me, hanging on for dear life! If the cream doesn’t get rid of it I am sure the smell of the cream will, it absolutely stinks! I am surprised that Looney Tunes skunk isn’t after me, Pepe Le pew.. 😉 

I had a chat with my Mother this morning and she said that her, my eldest brother, my Father and sister were all putting money to buy my card making stuff so I can order it today! I was so pleased, and it has all been ordered and will be here next week. How kind of them all, I was really touched by their gesture and I would like to very much thank my big bro who I know reads my blog daily. I will get that pink beaded bracelet and a matching card with feathers to you asap ;D 

It will be another restful evening ahead I hope! The wind and rain here is really bad today, it makes me kinda glad I cannot get out, I would be doing a Mary Poppins style floating through the skies with my umbrella otherwise. I actually prefer this kind of weather to sunshine though, I feel cosier and more secure for some daft reason. Plus it keeps the drunks out of the park which is a bonus! 

I plan to put on a film, snuggle in bed, drink more tea, take my 50 billion evening tablets (only slightly kidding about that number 😉 ) and stay as still as possible to help the muscle pain and cramping. It may not sound exciting and I know many would scorn an evening like this and be out on the town instead. But hey, I am the one who isn’t going to be freezing, wind sweep, water logged, spending tons of money on drinks and taxi and waking up with a hang over. Compared to that, my evening will be tickety boo 😀