Injection

So my patch idea helped a lil but the pain and sight is still terrible.

I resemble a pirate so much, what with my crippled leg, shoulder walk, patch and scowl.. All I need are candles in my hair and I would be Edward Teach, Black Beard the pirate, and he came from Bristol! He was born five minutes away from me.
Arrrr I be like sailing the seven cups that need washin up, the sea will ave to wait!
😉

In other non pirate related news I arranged my vitamin D injection and it’s Monday at 2pm. And the best thing is the injection goes in my arm not my bum as people kept saying! Oh yeah, no stifling inappropriate jokes for me now! ;D

I am trying anything that could help me, even if it’s just a lil bit. The injection makes the vitamin D go straight into my system and I reckon it will help. I’m to have one each month until my levels go to the ‘normal’ 75+ instead of under 10. If it helps I am happy to continue it, I’m really hoping it does. Fingers crossed and gypsy luck! 🙂

It is beyond hot here at the moment, with my pain causing me to have a constant temperature and my having to lay/sit on an electric blanket most of the day is turning me into a human sauna! I would charge people to have a sauna but they’d have to sit on my lap to get any benefit and I’m not keen on that idea. I’d be covered in their sweat too, yuck! I’d rather be poor!
🙂

My father is dropping off some of my billion of pills today, so it’ll be great to see him and have a catch up.
I’m very similar to him and we are very close. Even more so since my illnesses. He’s always there for me, for anything and that’s rare but runs through my family. I am incredibly lucky to have such support and help from my family, we are very close knit. I feel for people who don’t have this and always hope they have someone, be it a family member, friend, partner. It’s important to have someone, chronic conditions are so isolating, so emotionally difficult that being alone coping with them must be a nightmare.

I may be severely chronically unwell but I have support, laughter, help and people to talk to if I need it. As far as I’m concerned I’m extremely lucky, and I am grateful for all I have. I have far more in my life than I don’t and no matter how bad things get I hold onto that and things don’t seem that bad after all 🙂

Huggy huggy

The joy of rib and upper body squeezing is back. Feeling as though I am in a constant bear hug and my breathing feels restricted. There is

no point in phoning the doctor for help, they have no idea what it is and are waiting for all my tests to be done and my results to come through before they can do anymore. I completely understand this, and have agreed no furthur action can be made until all the facts are known. Plus the word MS will be thrown about again, the hug being an MS hug, and yes if I do have it then I will deal with it but I am not going to get into a tizz about anything or any name until I know the truth. As I said to my partner, I think the real problem is my brain has become so big through all of my intelligence that there’s no room left in my skull to keep it in. So my brain is bruised due to the pressure.. I am sure that is where the problem lies… 😉

My mobile phone is nearly at the end of it’s life which is both sad and annoying at the same time. Sad because I will miss it in a funny sort of way, it is so easy to use, and has so many pictures etc on it I need to get them off before it totally dies. Annoying because it is constantly turning itself off, not charging or texting or calling properly anymore. I have placed an order for a new one, my first ever contract phone as I have always used pay as go due to my sim deal being so great. But alas I cannot afford to buy a new phone at the moment so I opted to go on a contract one as the phone is free. I need a mobile to be able to phone/text people when I am unwell, or at hospital/appointments. To keep in contact with my nearest and dearest so in a way it has become a necessity for me, a thought which I am not keen on but know it’s true so I may as well just admit it to myself and move on with my new mobile and the relief I can contact someone if I am unwell.

What with my huggy pain, body pain and neck seize which started coming on last night and has decided to show itself too and is slowly working its way across my shoulders I think today is going to be a long one. Thankfully my neuro aspects have calmed down in the last few week and my ‘fits’ are only four times a day now and my headaches not so constant. This is a huge improvement, and if it wasn’t for the pain I would be able to walk a lil better as my legs are not cramping as much. 

I know from past experience my body will eventually calm down and not be as bad as it is at the moment. At least these days I know so much more about how my body is, how to help it and know the signs. Not like when I first became unwell, I used to worry about everything that was going on and I had no idea how to help myself. That was a bad time, because instead of pacing myself and resting up I used to try to push through it then spend the next week in agony, laid in bed with only codeine and paracetamol to help. I had no idea what was wrong with me and as the symptoms escalated so did my confusion and sleepless nights trying to figure out what was wrong. Those days are long gone thankfully and I now know exactly what to do when my weird and wonderful symptoms rear their terribly ugly heads. How the pain is going to spread and to where, to completely rest when my legs are spasming and not try to walk around on legs that will simply not work. Knowing helps so much, not just me but the people around me. If I say today is a bad day, or my neck is seizing they know it’s all just part of my conditions and don’t worry so much. That to me is the most important thing of all, not worrying or making things worse for other people. The knowledge helps them to deal with it in their own way and not be scared by it.

It’s strange how illness can come into your life and you eventually accept it, just plodding along and dealing with it as you do everything else. It becomes part of you, part of not only your life but others. And the word ‘part’ is the key word, I no longer let my conditions rule my life or anyone elses. Yes, they control my body and now even mind, but I won’t let it become me, the only thing about me and my life. I will work with it, live with it, accept it but will not let it be my main 24/7 thought, I still have a life, reasons to wake up in the morning, to be thankful I wake,appreciate the life around me and look forward to the day ahead. Even if it is one of huggy, pain, seizing, I am still here, still alive, and that is the main thing, until I no longer breathe I aim to enjoy life as much as possible and be thankful that I am still part of it regardless of my conditions.