Thank You

After a day of shame less self promotion of my blog yesterday I received the largest number of hits I have ever had in one day, 100 to be exact. This morning things are zipping along nicely too with over 20 hits in the last hour. I am amazed at the response from Facebook, Neurotalk, Dinet, Twitter, UK Potsies and anywhere else I may have casually dropped into conversation that I have a blog!

This month I have had the largest amounts of hits on my blog since I started with well over 400 and we still have one day of May left!

Thank you for taking the time for read my ramblings and a very special thank you to those of you who were kind enough to leave comments. It means the world to me.

I found out yesterday through Twitter that May is Ehler-Danlos Awareness month so quite by accident I may have helped spread the word a little. I am just getting to grips with Twitter I am mainly self taught. My main problem is that the majority of things I want to say contain much more than 140 characters and the people I chat to struggle to keep up with my lightening fingers (if I am having a good typing day!).

When I started my blog in 2008 it was a way to vent my feelings about the hideous situation I was in. The incompetent Dr’s and  a work place where instead of trying to support me, my colleagues and superiors went out of their way to make my life miserable. It was also a way to combat the loneliness and isolation I felt being stuck at home all day everyday after becoming ill.

In the first few years I wasn’t a regular poster and it was very hit and miss. Its only really this year that I have fully embraced this world of Blog thanks to the support of people like my mum and Ellie my best friend.

My husband thinks its crazy that people from all over the world stop by and read my posts. He isn’t really into the Internet he prefers his PS3! Everyday when he gets home from work now he asks “have you been blogging today?” and “how many visits have you had?” In his own way he is incredibly proud of what I have done.

I want to share a little of a text message my mum sent me last night when I told her that the activity on my blog had gone mental

” Really, really well done! But I can’t believe the state of your feet!”

I know my mum is very proud of me and the way that I handle things but that text brought tears to my eyes last night.

So thank you again to everyone who has stopped by and taken a peek. I know I keep saying it but I truly mean it Thank you xx

Blood Pooling

The blood pooling in my feet has been quite spectacular for a few days now. So I thought I would share a picture of my revolting tootsies! The left foot has been allowed to dangle for five minutes the right foot has been elevated during the same time. I would have tried to last a bit longer but my foot started feeling prickly! So now you can see the various colours my lower extremities go when not elevated.

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

medication update

So I have had a couple of days of the diazepam and its done wonders for my back and pelvis pain, especially at night. I am no longer waking up in agony in the morning. This has got to be the first time in years that my sleep hasn’t been prematurely ended by back / pelvis pain. The down side is that I am only allowed these tablets for 5 days due to them being highly addictive. After the five days is up I will be back at square one.

My hip pain isn’t being touched by the diazepam. I know without seeing the Dr I have a flare up of bursitis caused by walking for Lilith last week. My hips have been like this since 2008. As long as I keep walking to an absolute minimum my hips behave, anything above this and I am in agony. The worst thing is they will take months to settle.

Due to not being on top of the hip pain I rang my GP today hoping that he would finally break out the big guns and go above tramadol and head into morphine territory, not because I am a junkie but from past experience I know that a few weeks on oramorph will actually settle the pain down. Unfortunately my GP and I do not see eye to eye on this. I can understand his position but I don’t think he wholly understands mine.

For the moment I have been prescribed a gel Ibuprofen to massage into my hips 3 times a day. He has also given me a cream that is derived from chili peppers. Apparently the cream confuses the nerves and disrupts the pain signals. The plan is that I am to put the ibuprofen gel on my right hip as this is the least painful and use the chili cream on my left hip and see which one works best. He said I may just have to wait it out for the pain to settle. Believe me I will not be doing that. If the pain doesn’t settle I will be ringing him daily until he starts listening to me.

At present the chili cream is out of stock at the pharmacy and they hope to have it in for me tomorrow. Once I have used it a few times I will let you know how I get on. My skin is very sensitive to chilli’s so I am going to get hubs to get me some latex gloves as it will be bad enough with my hip and buttock burning without the palms of my hands joining in. It doesn’t seem to matter how much I wash my hands after dealing with chilli’s I can’t seem to get its natural oil off my hands.

I have quite a few years ago managed to get chili in my eye and oh boy did that smart!

The GP  has asked me to come and see him for a face to face appointment to discuss Lilith’s letter. I asked him if we couldn’t just discuss it over the phone as a trip to the Dr’s or the local hospital is causing me to be bed bound for 3-5 days afterwards. He then suggested I should wait until I felt better to come and see him. If you hear a thud its me banging my head against a brick wall!

Thud, Thud, Thud……

Its not his fault he is new to me and my situation, at least my other GP as crap as he was would come and do a home visit if he needed to discuss something with me. It was a rarity but he understood the damage these visits to the practice did. I think I may need to write to my new GP to explain things, I don’t think I have been explaining myself very well and I forget that he doesn’t have the time to sift through 37 years of medical history. Its frustrating but I need to find ways to help him to help me or at least meet in the middle.

He did say on the phone that he felt Lilith’s letter had been very good and I had obviously got a lot from the appointment – if you just exclude the back spasms and bursitis.

I am finding it increasingly frustrating that no one in the medical field is taking the level of pain I am in seriously. It seems at odd with all the posters you see in all the accident and emergency departments where they urge you to tell a nurse or Dr is you are in pain. Outside a hospital environment it seems you are left to get on with it.

Its a difficult situation I don’t want to irritate my new GP who is on my side (well more than the last one) however I don’t see why I should be in pain when there are medications out there that could resolve this.

Quick update

Dr has just rung and I have been prescribed diazepam ( Valium) which I have spelt wrong but at present not really that bothered!

I am to take these three times a day for 5 days to see if this relaxes some of the muscles that have now started spasming.

So if I’m not on here for a few days its because either a) I’m asleep or b) I’m as high as a kite.

Thanks xx

PAIN

I have been suffering with an increasing amount of pain over the last few months and the last few days have been a complete nightmare. I am barely sleeping and I am waking up at around 6am in the morning shaking due to the pain I am in. I just can’t get on top of it.

Currently my pain is in my left Achilles tendon, both hands,both knees, my spine and pelvis. My spine and pelvis are what is waking me up in the morning. Usually a little gentle stretching and walking will loosen things up and make the pain subside. For the last two days this hasn’t worked. Don’t get me wrong I am not screaming in agony but every movement producing a grinding, gnawing pain. I can feel my hip bones grinding in the sockets as I move. My muscles are also aching and the pain is making me feel quite unwell and I am getting tearful at the drop of a hat. Which isn’t like me unless I am on prednisolone!

I have taken matters into my own hands today and rung the Dr’s surgery and asked that the duty Dr ring me. I need something now to deaden the pain and I can’t wait until Dr J my own GP is back in work tomorrow. If they fob me off I will take myself to accident and emergency, they wouldn’t leave an animal in this kind of pain.

I believe this cycle of pain has been started off by Lilith making me walk last Wednesday, the pain has got progressively worse since then. I tried to tell her it was a bad idea but she wouldn’t have any of it.

 Yesterday my knee gave out whilst I was coming out of the shower, how my face isn’t covered in bruises all the colours of the rainbow I don’t know. Falling like that makes me feel weak and vulnerable. I haven’t even mentioned to hubs as there is no point stressing him out over something he can’t change. Ive been lucky this time there is no evidence of my fall! Otherwise I would have had a bit of explaining to do.

I didn’t need to contact him at work as I had a friend coming around for coffee about 30mins after my little escapade. I wasn’t going to be alone and to be honest I prefer to cry on my friends shoulders rather than hubs. Not that he is unsympathetic, he really gets my frustrations its just it puts more stress on him that he doesn’t need. He already has it pretty tough with holding down a full time job and looking after the dogs and me. I admire him so much for coping with all of this. People don’t realise just how much he has to do and it is done without complaining and with a sense of humour. He has the ability to turn the darkest moment into side splitting laughing attack. Its a quality he shares with no one else and I love him deeply for it. Don’t tell him though as it will go to his head.

There are millions of husbands, wives, mums, dads, brothers and sisters balancing their own lives whilst tending to the needs of their chronically sick nearest and dearest. They are an unpaid, unrecognised, voluntary organisation that receive very little thanks or recognition from the outside world. So to all you carers out there I salute you and thank you from the bottom of my heart. xxxx