Don`t take up a disabled parking bay if you do not need to use one.

There was this clicking sound every time I turned over in bed - my hips! They do tend to sublax at will, and can prove very painful as you can imagine, who would think you can hurt yourself in bed?!!

We popped into town this morning as I wanted a pouch in which to keep my new phone so that it won`t get scratched. We parked in the disabled spots as the place we wanted to visit was not far away as my walking is not very good now. When we got back to the car a traffic warden was taking photographs of the car next to us and writing a ticket out. It obviously did not have a disabled badge displayed and so they got a ticket, and serve them right. People do tend to park in the disabled bays without a badge on a Sunday, perhaps thinking the wardens will not be around. It is not always permanent wheelchair users who need to park in disabled bays, those with limited mobility, who would be unable to visit the nearby shops if they had to park further away also use the disabled bays and with good reason. If you could only walk a very short distance before finding the pain too much for you, you would want to park as close as possible too!

Like doing a marathon.

Writing in blue, because I feel blue.

Yesterday we went out to get a few bits and pieces, we went into Asda and bought a toy for Poppy, it wasn`t the big Asda, it was a small Asda home store and we only went upstairs on the escalators, took the toy off the shelf, paid for it and went back downstairs in the lift as for some strange reason the escalator in this particular shop only go up, you then have to walk down a long flight of steps! We then went into the pound shop next door to get a new drawing book for Poppy so we just went straight to the section with the drawing equipment and then to the till to pay. By this time I was starting to flag and walking was becoming even more difficult and painful. I was unable to get one other item that I wanted in this shop so we decided to give a home bargain shop, just a couple of shops along, a try to see if they had what we wanted. As soon as we reached the shop I realised I had made a mistake, it was already too much for me, just the short walk along the parade of shops, not very far but obviously too far for me. We went into the shop but we had only got half way down the first aisle when I realised I could not go much further, the pain was bad, very bad. I said I was struggling and so we made our way to the exit, me walking very slowly by now, trailing behind and leaning heavily on my stick. The walk back to the car, no more than about 10 or 20 yards, was slow and painful. I kept having to stop and rest, leaning against a convenient pillar on the shopping parade. By the time I got to the car I could have cried, the pain was excrutiating, my back was screaming out in agony, both hips were so painful. I eased myself carefully into the seat and the relief I felt on reaching the car was immense. It was like doing a marathon, except I was only walking a very very short distance. Today my legs have felt so heavy and I have been in a lot of pain with my back, it is so wearing to be in pain all the time, even though I do my best to keep a cheerful face showing to other people sometimes I just can`t manage it, and I am best at home, resting in the hope that the pain will abated a little. Ehlers danlos hypermobility syndrome, grrrrrrrrrrrr.

HOPE ITS JUST ARTHRITIS.

The appointment has arrived for my bone scan on Wednesday. I have to be at the hospital for 9am and by the looks of things I shall be there for several hours. The letter came with a booklet explaining all about the scan, apparently it is a very expensive procedure and the radioactive material they will inject me with is expensive so I have to ring if I am unable to go as soon as possible. I must admit I feel like ringing and cancelling the whole thing, I am feeling extremely nervous about it. I am fine with injections, when I had breast cancer and the subsequent chemotherapy I had numerous injections over the couple of years I had my treatments, but I am claustrophobic and the thought of being in the enclosed space is freaking me out a bit. Some people have asked if it is like a CT scan or an MRI, well I am not sure to be honest, it does sound similar, except that the leaflet says it will take almost an hour, and when hubby had an MRI it was about 20 minutes, and he did not have to be injected with radioactive material! My brother in law kindly told me the other week that it was the most painful injection he has ever had! Thanks Rich! It is a well known fact that women can bear pain a lot more than men (at least thats what the nurses and doctor said on 24 hours in A and E on tv the other night) so I am hoping its true!! After all we have to bear childbirth don`t we girls? Enough said.

I am a bit worried about the results of this scan, the consultant who ordered it for me is the surgeon I see about my breast cancer, and when I said my arthritis pain was much worse he said we had better get this looked at. I keep telling myself it is my arthritis that is causing the pain, but a tiny corner of my mind keeps saying to me "it could be worse than that". God I hope not. Hope its just arthritis.

Bone scan.

Full body bone scan.

On Friday I had my annual visit to my surgeon, I see him every year for 10 years following my diagnosis of breast cancer. He came into the room and asked how I was and I said I was fine apart from the fact that my arthritis was quite bad. Oh how I wish I had kept my mouth shut, he asked me where the pain is, has it become very bad, do I have pain elsewhere? The pain in my lower back is with me all the time, I also have it in my knees, ankles sometimes, shoulder, hips and at times in my upper back. He popped out of the room then appeared a few minutes later, he thinks I should have a full body bone scan, just in case, was that okay? Can`t say I fancy the idea, but then he is the specialist so I should trust his judgement, he knows what he is talking about. You should also have an xray of the lower back, we can arrange for you to have the xray today, and you will receive a letter to go back for the bone scan soon he said. So off I went to have a back xray which thankfully did not take too long, the bone scan will take a lot longer. I have heard what happens and don`t really fancy it, but needs must. The doctor freaked me out a little when he said if there is anything to discuss you will receive a letter to come back and see me to talk about it. Hopefully it is just my arthritis that is troubling me, I cannot think of the possibility that it could be anything more, so I won`t. Comes to something when you want to hear the news that your spine is crumbling!

The invisible and the pain.

Ehlers danlos and hypermobility syndrome. What a mouthful! I suppose it needs a really long name because it covers a multitude of symptoms! The collagen, which is at fault ofcourse, is not only in skin, in joints, but in every part of the body, and so it affects all kinds of things. The thing is, it is largely invisible, and so if you do not walk with a stick, sit in a wheelchair, or wear splints or supports, others do not realise what problems you have. If you think about it when a joint over extends, or bends in a way it is not meant to, it will become worn and pain is bound to result. If the organs of the body are affected, which they frequently are, you can have all kinds of problems with your heart, stomach, bowels, bladder. After all if the walls of, say the bladder, are stretched you can well imagine the trouble it could cause, lets just say Tena lady and leave it at that. I have had physical problems since childhood, especially with my joints, my knees would swell up and be painful but my doctor would diagnose fluid on the knee. I would go to school with a leg bandaged from ankle to thigh! My joints have always sublaxed, or partly dislocated to those who are unaware, and I would find my hip would give way whilst walking home from school, making me fall to the floor. The lollipop lady often picked me up when I suddenly collapsed in front of her, and sat me on the concrete bollard at the roadside until I got myself together. She presumed I tripped I expect, but I did not, my leg would just give way underneath me, and would not support me. There was nothing I could do to stop it happening. I would tell my mom, but she just thought I was clumsy and kept tripping over my own feet! The number of times my knee or ankle has given way, quite a few times I have plunged down the stairs, unable to save myself or stop it happening. These days I have a rail either side, which I cling on to as I walk downstairs carefully. My hip is often very painful, especially if it has sublaxed just because I turned over in bed! I walk with a stick now, my ankles and knees often "go" and so it is easier and safer, I don`t want to fall. My spine is unstable, and painful all the time, not helped by a fall I had some years ago when I slipped on black ice. Now I have trouble with such a lot of joints, I can only raise my left arm some of the way above my head as the shoulder is hurting these days. My fingers ache and I can no longer sew as I used to do. It is easier to type than to write for too long holding a small pen. I can not stand in the kitchen making the elaborate cakes I once did, standing causes my back pain to go into overdrive and my fingers are unable to squeeze a piping bag to ice the cakes. My mobility is severely restricted, walking causes such pain it is easier not to do it. My life is a world of pain that I try to hide from others, I do not want those I love and who love me to know my suffering.

We need help.

Its about time the health professionals got to grips with ehlers danlos syndrome. After all it was discovered in 1963 so by now, surely, it should not be such a mystery to the medical people who should know all about it. Its a complex subject I know, and there are many different types, but if you have it, its no joke, and it would be nice to be able to discuss options such as exercise and pain relief without the medical doctor looking at you as though they do not believe what you are saying. It is very isolating, personally I have suffered in various different ways for many years, and now my arthritis in lots of my joints is a real bugbear for me, it is very debilitating and I often feel trapped within the confines of my own body. As it does not show, like a broken arm or leg, people are unaware of the problems faced by those with this illness but they are very real, and very painful. Ehlers danlos syndrome is a problem with collegan in the body and joints wear too quickly as they are overused, it can affect internal organs, eyes, ears, heart, you name it. Please medical fraternity, do some research, we need help!

A pain in the ......................

Feeling a bit blue so writing in blue. Nobody can describe the affect of constant pain on a person, unless you have the misfortune to suffer constant and unremitting pain you would not understand what it is to go through it. With ehlers danlos syndrome pain is part of every day life, I can turn over in bed and my hip will sublax (partly dislocate), unfortunately this is something which happens often. I already have back pain as a constant reminder of my health problems, my knees crunch and grind and if I were to attempt to kneel down the pain would be terrible, I know I found out the hard way! My hips now give me constant problems, and often give way on me, making me walk in a very odd way. For the past few months my left shoulder has been causing problems and now my right one has joined in. Basically I am dropping to pieces. Ehlers danlos hypermobility syndrome is a pain in the.................................