Monday, 29 October 2012

Yukky but strange.

Dear Diary,
Would you like to see my little surprise that I discovered whilst relaxing in the apartment in Manchester?
If you are squeamish, then please don't look at the picture below:
There is bruising around the bit where you can see the bone under the skin. It looked horrible when I showed it my sister and we couldn't pin point anything in particular to what has caused this exactly.
This week, I need to just keep an eye on it to make sure it doesn't get any worse.
Ahh how it's all fun and games when you have E.D.S.!! Well not really much fun but I like to try and think light-hearted sometimes.
I'll let you know how it ends up, bye for now Diary. xxx

Wednesday, 24 October 2012

Rest in Peace Dorian.

Dear Diary,
I saw this a few weeks ago briefly but read it thoroughly this week. It is very sad with what happened to Dorian, and it really brings it home.
If only people/medics can understand what it is like living with chronic pain and how bad it really is. It's also very difficult to even try to switch your mind off the pain when you have in many places at once, like I have it in my bad hand, right shoulder, right knee, my ankles even and wherever else feels like its sore. Like I said in my previous post, it does make you feel really low to the point of crying. One thing, I'm glad of though is that I had a heart murmor and was sent to R.M.C.H (Royal Manchester Children's Hospital) under the care of Professor Galasko who diagnosed me at two weeks old with E.D.S. There are so many people who are on a battle to be diagnosed and my heart goes out to them.
This is also one of my reasons why I'm trying to raise awareness about this condition. So please please share about this story and about this facebook page, and my blog to help people like me, like Dorian and many other EDSers.  Xxx

Feeling low is a pain.

Dear Diary,

I’m sorry I haven’t wrote to you for a fair few days, today is the first chance I have been able to write. Last week, I felt tired, sore from the blood test, then the flu jab and I have felt too low in myself to write anything.

I think everything just took its toll on me last week with one thing or another. Being in pain, the terrible sleeping pattern and how it was making me feel. It was hard to think positive about things when all you felt was pain. They say ‘don’t think about it’ but you can’t help but think about feeling sore. It overtakes everything else. Things seemed rather overwhelming. I don’t often tell people how I really feel inside, my thoughts are that people have enough things going on in their own lives to hear me talk about my emotions in a deep manner. I also fret to myself that people may think I’m just feeling sorry for myself even though I don’t as there are people worse off than me. E.D.S can cause for its sufferer to have some form of depression (I was diagnosed in early 2008) and I have severe anxiety problems. I think anyone could understand if someone had chronic pain and they had depression, I think some people may not even realise that I too suffer from this as I always smile.

My left arm from the flu jab is a lot better now and the bruising on the right arm, is all green and yellow which I’m glad about.

Next week I have Hydrotherapy again, I’m sure I will gain plenty of benefit from it like I usually do but perhaps more so.

I will write to you again soon Diary, so farewell for now.

Thursday, 18 October 2012


Dear Diary,
Well I've had my bloods done and it wasn't the worse blood test that I have had, thankfully. The lady was going to use that magic cream but decided not to as she thought it wouldn't make much difference.
After struggling to get a clear vein in my left arm, she ended up doing it in my good arm. Damnit! She used a tiny needle and managed to get blood out of me. With my dad, and the lady, together they distracted me as much as possible by talking about my upcoming trip to Manchester although I still felt the pain of the needle going into me. She was very gentle with me and took great care not to cause any further bruising than necessary. Afterwards, she held the cotton bud tightly over the needle hole for as long as she could.
Now it is hurting and struggling to move my arm (luckily I am typing this on my iPad and thankfully my fingers are bendy so they can twist to each letter). There a little bit of bruising but not the worse I have had.

I just hope I don't have to wait too long to find out the results but in the meantime, I will just try and think about other things.
See you soon, and keep smiling. Xxx

Saturday, 13 October 2012

Still swelling up...

Dear Diary,
If I could just have one day where I didn't swell up or feel pain, I so would. It is hard to explain to people who don't really understand chronic pain. Sometimes I do feel like a broken record saying how I'm in pain a lot but if I didn't then people wouldn't understand how or why I am like I am. Maybe I'm just talking in riddles.
All this week, my leg has been swelling up and it has caused throbbing in it. I've tried to raise it up but it hurts my hip having it in mid air for periods of time. I try to walk around my bungalow as much as I can but again, the pain is awful. The way my knee is causing me to walk is affecting my hip and my foot.
I just can't wait for my new Occupational Therapist to visit me and hopefully I can have something that will help take the pressure and some of the pain off my bad leg so I can manage to walk round my home easier and safer. Hopefully this will also prolong the effects of the Arthritis from happening so soon.
Typing this on my phone is much easier for me as it doesn't strain my shoulder as much. Anyway Diary, I'm off to get my hair washed and then relax before I have to get ready for later. Just keep telling yourself Diary, keep smiling...

Wednesday, 10 October 2012

Rheumy Time...

Dear Diary,
Yesterday I had an appointment to see a Rheumatologist. It was my first time in seeing a Rheumy, so I was quite nervous and unsure of what to expect.
As soon as she called my name, she quickly introduced herself and shook my hand. In with her was two medical students which I didn’t mind being in the room with. I always think ‘if I let them in the room then there are one or more people who are aware of E.D.S’ which is my aim. J They seem friendly and interested in what I had to say.
After many questions and a good examination of my joints, which included bending them as far back as she could. She wants me to get my liver, kidneys, my heart, my bones and my thyroid checked out. So unfortunately I have to go and have my blood test done which I’m not looking forward to as my arm always ends up a mess afterwards. Though I’ll be having magic cream and I’ll tap regularly on the surface (a trick I learnt from Writington Hospital when they were inserting the Anaesthetic needle into my hand) and keep it warm to help them get blood out of me easier.  
My heart will be checked by an Ultrasound scan, I presume like they did do when I was younger. The Dr wants to see how it is because I had a heart murmur when I was a baby and with my spine being so severely curved.
The reason why she wants me to get my Thyroid checked out is to see if there’s any reason (under/over active) to why I’m so underweight. I’m not majorly underweight though. So she is also referring me back to see a Dietician. They have always told me to eat little and often. Several times they tried me on different weight gaining supplements, like Calshakes, Ensure+ and Calogen but they all filled me so I didn’t feel like eating which I was unhappy with. I just hope that together I and the Dietician can come up with a diet that I will feel happy with and that will help me.
I have Osteoporosis; I was diagnosed while I was still at school so the Rheumy Dr wants to see how they are doing.
 I am also being referred to see a Podiatrist to find out about having some support things to hold up my ankles in shoes. When you see my naked feet, you will see that I have flat feet where the muscle is supposed to support the ankle upright but they don’t. As a youngster, I used to have to wear Paedro boots (which came in all jazzy colours) but they felt hard on my feet.
She is getting in contact with Hydro therapist to see what is happening with the Hydro as it has been out of action all summer but she wants me to go to it permanently. Hydro therapy is a pool of hot water and it helps the muscles and joints. I get a lot of benefit out of it although you only get to have around fifteen minutes in it as it is very hot. You crinkle up like a prune within fifteen minutes!
Fortunately my leg was swollen so she had a look. Again it was squishy and throbbed a little. After a little prodding, she told me it is Peripheral Edema. I’ve noticed it swells up after every time I dangle my leg out of my bed from the knee downwards. This is common in older people, in a way; it is like I have the body of an eighty seven year old (when you pair it up with the Osteoporosis and Arthritis). L
We had a good conversation about Occupational Therapy. Luckily I have my new OT coming to see me next month. During this discussion, we were talking about what hand/finger splints could be good for me. I have been given the task of looking online at EDS support sites/groups to see what other people have that helps them. This was something I was going to ask the Rheumy Dr about so I was quite happy when this came up. Every time someone does my nails, they bend funnily and it hard to hold them as they are so bendy. Not only doing my nails, but holding pens and even typing are a bit of a task for me. For so long I have just put up with it but now it does hurt a little. Apparently there all different kinds of hand/finger splints out there and the Rheumy Dr seem optimistic in getting me what I need even if it isn’t in this country.
I have also discovered that I have yet another condition called Arthralgia. This is basically joint pain which I think is in my knee especially. My list just seems to get bigger and bigger!
One thing also that she is doing for me is trying to get hold of my medical records from all the hospitals especially Royal Manchester Children’s Hospital. As she said, she isn’t sure where all the old records will be kept now they R.M.C.H have moved from the Pendlebury site but she will do what she can. I would love it if she managed to get hold of the videos they made of me when I was a youngster that was filmed for training and research purposes. I’m curious to see what they did to me and said about me. I have a lot of memories at the R.M.C.H and Prof. Galasko who I saw from when I was just two weeks old to when I was seventeen. J
So as you can see Diary, I have had a lot to take in and think about. I’m very grateful that I have finally found a GP and a specialist Dr who have took a keen interest in me and my E.D.S after all this time since Prof. Galasko. It has made me wonder why no one else has bothered to check everything out especially about my weight concerning the Thyroid issue. I am glad to have met this Rheumy Dr and will be seeing her again in a few months after all these tests have been done.  
The pain in my shoulder is worsening now so now I will love you and leave you to be...

Sunday, 7 October 2012


Dear diary,
After having a lovely sleep over at of my sisters last night, I am feeling very tired tonight.  I had a time.  As my shoulder is hurting me I am trying out my voice recognition software on my laptop to type in my diary entry.
I didn’t sleep very well last night because I was in pain and discomfort.  Anyone with EDS will understand how much we need to live with this condition, so luckily I have the patience to persevere with using this voice recognition!
I am glad that the swelling in my leg has gone down as it was quite swollen yesterday.  The swelling was fluidly and squishy. It was the usual swollen feeling of being heavy and achy. I’m unsure exactly why it has swollen but it keeps doing it, either on the leg or around the foot area. Every day I feel like I am constantly checking to make sure nothing has gotten worse but you have to remember not to let it rule your life although it is hard to strike the balance.
Due to lack of sleep, I will try and make sure I get a good night’s sleep tonight. My body is telling me to go now as it doesn’t have any energy left and the pain levels aren’t too good now. So I will keep you updated in my next diary entry, keep smiling J

Thursday, 4 October 2012

You're Pulled...

Dear Diary,
The time is 1:25am and I feel the most awake I have felt all day. This is just typical. It is well known that I get called a night owl by many people who know me. It can make me feel a little lonely sometimes because as everyone else is fast asleep, and I’m wide awake.
Now is the time I feel mentally best able to concentrate on doing my assignment work as I want to do some now but the pain in my shoulder is really hurting. I can feel all the tendons pulling yet I’m hardly moving it. So frustrating that I can’t use my left hand anymore or otherwise this would have took the load off this bad shoulder.
Today hasn’t been too bad for me pain wise which is nice. It definitely helps by having lots of rest and not over doing it.
I’m going to have to say bye as this pain is getting worse. Before I go though... please place yourself sitting down still and in the tendons in your shoulder are constantly pulling and against each other without even moving your arm. Not only this but that someone is lifting your shoulder round and round in its socket, over and over. This is an example of how much pain I am in so that you can understand a little more.  Goodnight diary.  

Wednesday, 3 October 2012

Smiling Gnashers...

Dear Diary,
Today I went to the dentist and it went okay. As usual, I took my two pillows so that I can lie on the chair comfortably. Everything becomes like a military operation where I am concerned, ha ha! Just like any other time I take a visit to the dentist, I always hope for the best.
My dentist has gotten used to me and my needs. Like I always raise my hand or do the thumbs up whenever she asks me questions or if I need a moment break. Luckily she knows about the EDS and knows to be a bit careful with me. She has done wonders for my teeth, as when I first saw her; I still had stitches in from when I had 7 baby teeth out in Lancaster Hospital (who never unfortunately bothered to have a follow-up after the surgery) around two years previously. My gums were red and bled a lot, they weren’t healed properly. I had loads of gaps from where the teeth were taken out and I grew to hate my much-loved smile. Yes, she has done a lot of work, and the majority of it is due to the EDS. When she applies the gum cream, she always makes sure she keeps it there longer to just make sure I don’t feel the injection. We have learnt a lot along the way although she’s a very good dentist.
Anyway, after several hours later of having rest with my blanket and sleeping, I’m feeling a lot better. There are still a few places where it is still numb but I am happy looking at my smile. J
My shoulder is niggling at me like it usually does and I have to keep it still just to relieve the pain although I do move it as often as possible so it does not go stiff. The windy and wet weather isn’t doing my knee any good; I am finding it difficult to get comfy. It kind of feels dead in an achy way. I get slight shooting pains up my legs but think that this is probably due to the bad weather.
My foot is a little puffy and swollen too. This is something I like to keep an eye on in case it goes a funny colour like it sometimes does. The funny colour is because I have a circulation condition called Perniosis, where the blood spasms under the skins surface. There isn’t a lot that doctors can do for this. So it is left for me to raise it up when it gets too bad or not letting it get cold. I have had this for a few years now; it took me about six doctors to find out what it was. First I went to casualty in Lancaster, then to a GP in Lancaster, then they referred me to Podiatrist also in Lancaster (I was based in Lancaster at the time so this was around eight to nine years ago) who didn’t really have a clue. By the time I came to live back in Barrow, I was still having problems with it so I went to my GP, who referred me to the local Orthopaedic surgeon at FGH who then referred me to see a Vascular surgeon (I felt really anxious by this point and tired at seeing so many medics) and after a quick examination, I finally got a diagnosis! This becomes the norm for when you have EDS, being referred to one medic to another and then again.
Apart from all the aches and the visit to the dentist, today has been nice. I am grateful to have a loving family who look after me and it has been nice to have been in contact with my friends. J
I am going to have to go now as my shoulder is causing me some pain and it is feeling really tight, like it is pulling roughly against my body. Until next time diary...

Monday, 1 October 2012

Diary Entry 1

Dear Diary,
Well this is my first entry and I’m not quite sure what to say so I will tell you how my day has been. Today I haven’t done much to feeling too tired. I struggled to get to sleep as I felt too achy to get comfortable in bed which ended in me lying sideways across my bed with my knees at the edge dangling. Once I was asleep, I slept fairly okay though.
When I woke up today, I felt tired and sleepy so I curled up on the sofa in my onesie with my blanket over me. I fell asleep until it was time to eat. Thankfully I wasn’t feeling too sore this afternoon, but I think the rest helped.
Tonight my knee has been sore, it felt like joint pain rather than muscular. I just wish there was more that could be done for it. I’m too young and would be an unsuitable candidate for a knee replacement as I have Osteoporosis; it might not be dense enough for it to be done. I don’t have much muscle tone so it would be too weak. At the moment, I’m just having liquid pain relief and a strong anaesthetic gel to put on it. I was offered an injection but I was too scared to have one done.
My shoulder blade hasn’t been too bad today but a bit tender tonight, I have Osteoarthritis in it. When I move it too much, it can be awful pain. I started having problems early last year before my sisters’ wedding, and eventually went to see a doctor about it. He said it was just a strain in the muscle but it never got better. I went back to the doctor (after my Hydro-therapist told me to go back) early this year, this time was better. This doctor properly examined me and asked me questions then told me it was Arthritis. I knew it was more than just a strain! It was so frustrating. I have to keep having rests as I write this to give my shoulder and fingers a break.
Anyway, think it is time for me to rest my shoulder now. I hope I get to sleep ok tonight and not feel as tired tomorrow so good night from me.  xxx