Monday 30 May 2011

Life being conducted from the confines of my bed!

So as you have probably realised from the last few entries of my blog, life well actually my health is on a bit of a downwards slide. Since Sunday I have been pretty much confined to my bed, walking, sitting and standing have become increasingly painful. I have one diazepam left and that will be taken when I can no longer stand the pain. However if the pain increases much more it will be taken sooner rather than later.

When I am walking I am finding it extremely difficult to weight bare on my left leg so I am now using my zimmer frame! Normally I furniture surf, but that requires two weight baring legs. Thankfully hubs is home so if I need things fetched from one room to another I am not completely stuffed. Holding onto a zimmer frame and carrying a cup of tea just doesn't work!

Lying still is the only way to keep my pain at a level where I can tolerate it. I am pretty confident due to the loss of power in my left leg I have a nerve being compressed. I also have a deep ache in my left thigh which feels like its burning deep within the muscle. I know that this is the sign of an irritated nerve as I have suffered with this since my back injury in the exercise class more than ten years ago. Its not massively serious as I still have control over my bodily functions. If I lost those then I wouldn't be typing this but taking a ride to the local hospital in an ambulance.

Paracetamol and tramadol are being consumed like sweets in this house at present. I have just hobbled to the bathroom to slather on more ibuprofen gel in the hope it will add to the level of pain relief circulating within me. The chili cream and I are  not getting on. Its not supposed to be used on broken skin, the area I need to apply it to has broken skin. I probably have an EDS related skin condition called Elastosis Perforans serpiginosum, its previously been misdiagnosed as ringworm - those treatments don't work and eczema its not that either. EPS, is a condition where the collagen is being broken down and pushed to the surface of the skin. More joy and yet another condition that will probably take me a while to have recognised as again its quite rare. It doesn't hurt, its prickly and a bit itchy. Its main issue for me is that cosmetically its not very attractive as when the area heals it scars leaving the skin darker than my normal skin tone.

Also the chili cream is leaving red blotches over my skin where its been applied. I am also having problems when showering the chili cream is being reactivated when coming into contact with water. It doesn't matter if the last time I applied it was 8 hours before, it still burns my skin. Its like eating the hottest curry you have ever eaten, you know eyes streaming, the inside of your ears burning and having that effect on your skin. I also had an accident with the cream last night. Despite washing my hands thoroughly after applying it I managed to get some in my eye. Not a joyful experience! In future I will be extra careful.

Although movement is hurting I am still trying to move around as much as possible once the pain medication has kicked in. I know its important to keep the muscles strong, its a vicious circle. So for the last two days life has mainly been conducted from my bed. Thank god hubs has been home to look after me and that I have the Internet to rant and rave on.

So I don't want this post to sound all negative as although I have been in a lot of pain I have still found things to enjoy. One of those things was finding out that my blog had over 1500 hits and the majority of those hits have come since February 2011.

I know many people read a blog  and don't leave comments but can I ask a special favour as a one off? If you are a regular reader could you just leave a comment even if it just says "hi, I read your blog and I live in the USA etc" It would be really nice to kind of gauge how many of you are regulars and how many just stumbled across me one day. I know its quite a big ask but it would really make my day and I don't ask for much! LOL

Thanks
Rach xx

12 comments:

Maxine Ferguson said...

Bloody hell Rachel, I never knew you were this bad :( You poor poor thing, and here's me moaning baout self inflicted pain...so sorry .
Max
XXXX

Anonymous said...

hi rach, just started reading your blog. very interesting and humourous in parts. glad to see it's the same witty rach i am proud to call a friend! thinking of you sweetie.
from sal lawrence

The Myasthenia Kid said...

Hi Max,

Thank you for taking the time to read my blog.

As you can see I very sparingly say how I feel on facebook due to some not very understanding people making quite malicious comments.

I save my best / worst for my blog where it feels safe and the people that visit want to know and care.

It means so very much to me that you have taken time out of your busy day to sit and read my ramblings.

Love
Rach xxx

The Myasthenia Kid said...

Sal,

Thank you so much for taking the time to read my ramblings.

I'm glad you get my humour! The last thing I want is for people to think I am throwing myself a pity party. Thats not the case, its just if I feel shitty I will write about it. If I feel good I will do the same.

Thanks again for leaving a comment it is very much appreciated.

Love
Rach xx

Clover said...

Please careful with that chili cream Ms. Morris. Is it even helping? lol xoxoxox Clove

The Myasthenia Kid said...

I am leaving off the chili cream for the time being! It can take up to a month to work and I just have too much broken skin - which it isn't supposed to be applied on.

Never mind I gave it a go!

Rach xxxx

Amanda said...

Heya lovey
I've just been catching up with the past couple of weeks - It's very strange to look back and read your version of events that I was around for!
I've spent most of the day in bed myself - brain has been playing me up this evening so dosed up on morphine and fentanyl but it's barely touching it :'(
Fingers crossed tomorrow it'll be a bit better - if i can get some sleep!
Are you free for another cuppa tomorrow? Actually it's today now... Tuesday anyway!
I'm hopefully off to bingo tomorrow eve, about 5.30ish but would be loverly to see you :)
Let me know by text when you get this
Lots of love
Amanda xxxxxxx

Shari said...

Hi Rachel, I think I've commented before, but I'll do it again. ;) I live in the USA in Indiana. I enjoy reading your blog. You can read mine too if you are extremely bored and have nothing better to do. Or, if you need something to help you sleep...my blog should do the trick. I hope you are feeling better soon.

The Myasthenia Kid said...

thank you Shalynn and Amanda.

Sorry to hear you aren't very good Amanda.

Shalynn I need to find your blog address and I will take a look. I think I have read some of it before, but my memory is shot to pieces!

Rach xx

The Myasthenia Kid said...

Apparently when Amanda said interesting to hear my version of events she had no idea that hubs was wearing my tiara before she arrived to watch the royal wedding with us!

Just to clear that up lol!

Anonymous said...

I have just found your blog this morning. I have so far read from the first day in 2008 through this 2011 post asking to drop you a line and let you know someone is reading. I am in the USA. I feel like I am reading my own story. I am anxious to get back reading to find out where the MG diagnosis goes from here. I have hEDS diagnosis confirmed (mEDS now being considered), POTS confirmed, Mast Cell Activation Disorder confirmed, mitochondrial myopathy diagnosed and responding to treatment (Mitochondrial Cocktail) and sero-negative MG diagnosed and responding to treatment (Mestinon and IVIG). GI motility is under question, irritable bladder is under question, elevated Vasoactive Intestinal Peptide being watched for a pNET, Chiari 0, cervical neck issues at every location, scoliosis, blood pooling, gallbladder surgery, pyloric stenosis surgery as infant, and on............THANK YOU for this blog.

The Myasthenia Kid said...

Hi anonymous,

Thank you for reading my blog and leaving a comment its always really nice to hear that the blog has touched someone.

You aren't the first to say that reading my blog is like reading your own story, over the years I have had quite a few people comment / message me / contact me via facebook where I have my The Myasthenia Kid page -https://www.facebook.com/themyastheniakid/ . I do like to know that I am not alone but I hate the fact that there are so many members in this shitty club.

So to save you some time, I am still not diagnosed with MG the latest farcical diagnosis is hemifacial spasms even though everyone but this one neurologist can see that my face is paralysed. I am back on mestinon as it can be used to treat PoTs (postural orthostatic tachycardia syndrome) and guess what my ptosis still resolves with mestinon. My bladder problems also disappear when I take mestinon which from reading Neurotalk is another indicator that it is MG as bladder issues are common. I still have the HEDS diagnosis but it looks like their maybe some vascular crossover which I need to have a serious look into. Last year I developed a spontaneous spinal fluid leak due to HEDS. That has got to have been the single worst year of my life pretty much combined to my bed. Luckily that healed of its own accord (pretty much but I still have issues).

You can also find my blog over on Wordpress now www.themyastheniakid.com if you prefer that blogging platform.

Thanks again for taking the time to reach out to me. Its always so nice to hear from someone. Take care

Rach xx