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.

Mobile phones and bath seat

Last night I did something so stupid even I couldn’t believe it.
I had managed to make pasta and wash up and was so pleased that I opted to put a wash load on too. I gathered the clothes on the side before putting them in the machine and was really chuffed I had managed to do three things in just one evening. I toddled to my room to rest and looked on my side cabinet where I usually leave it and it wasn’t there. I didn’t worry as im often forgetful and started to look around for it. Mild panic set in as I looked downstairs too and nor I or my son could find it. Then I heard a clunk.. Clunk.. From the washing machine.. Yes, I had put it in the machine while picking the clothes up from the side where my phone must have been underneath the pile. My son and I both knelt down to look at the machine and there was my phone, happily spinning around in soapy water on a 40dg cycle. I put it on rinse and drain and managed to get my sopping phone out. There I rested it in a bowl of rice until the next morning where by some miracle it worked! It’s a lil water damaged but I can put up with that, I just can’t believe it happened in the first place! They say everything happens once, yes well it had only better be once as I cannot go through that rigamole again!

Today my luck seems to have changed. I had my bath lift installed, my stair railing fixed and the letter from my doctor to take to my assessment. Both the lift installer and the builder/fixer arrived on my door at the exact time which was amusing. I sent one to the bathroom and one to the stairs. Both were lovely though and chatted as they worked. I am extremely happy with the bath lift and aim to use it asap. My legs have decided to swell and lock today so no chance of having a bath yet. But in time I will enjoy laying back and being lowered into a hot bubble bath and maybe float a few rubber ducks too 🙂

My father came round to drop of some bits of food, lighters, and black bags this afternoon. He also had my drs letter which I am itching to read! I will leave it though and trust my Dr to have written the full truth of my health. I now have her letter, my specialist confirming m.e and fibro, my ot contact numbers, house move forms and letters confirming my up coming appointments. Hopefully this will all be enough to show them I am not faking.. I hope!

I am going to rest up this evening and hope my legs go down and the pain becomes less intense. It’s a lil bit too much pain for my liking and I have had to take an extra boost of morphine just to get me to the bathroom and back into bed. By past experience I know this usually lasts a few days, the pain, cramping, muscle locking do love to stay around and party for as long as they can. Eventually they are fazed out by morphine, muscle relaxers, tens machine, codeine and morphine tabs which is great, but until that point I waddle around trying to place my feet in an order which I hope doesn’t make me fall over and putting as least possible pressure on my feet so I don’t swell even more.

So a night in bed, taking pills every two hours, electric blanket on high, tens machine on,orthopedic cushion, laptop, tea facilities and chocolate to hand is my plan. Hoping tomorrow will be better, but thankful that today things were fixed to make things better in my home. 🙂