Wednesday, 13 July 2011

D-Day = Disaster day.

We went to the hospital today as explained in my earlier post d-day. We were full of hope that finally we would have some answers and I could begin to get on the road to recovery.

When we first got there we were led into a room with an assessment couch. H was being as good as gold and being her flirty little self! I was asked to get on to the couch where he could then asses my mobility. With much difficulty I got out of the chair and on to the couch.

The last few days have been particularly bad to the point where even with my walking frame last night, my legs gave way and I ended up in a heap on the floor.

So he pulled and twisted, and I felt like I was being torn from limb to limb crying and telling him yes that does blinking hurt! But he would repeat it more than worse leaving me in tears and biting back from screaming. After doing his examination he got me to sit on the couch and tested my reflexes, which as I have been told before are a bit weakened.

He then when down the line of questioning saying have I lost control of my bowel or bladder. Did I have any numbness.. No... Been down this road before.

So he asks me to stand up. Bare in mind I can hardly stand and I am wobbling even holding on to my chair and the bed he then asks me to stand on tip toes. Nope not going to happen. So he tells me to sit down.

Good bloody job really. I'm sat fighting back the tears because the pain he has just put me through, I know for a fact is going to set me back by days. He then turns around and says he doesn't believe its my hip that's the problem but my back. The reason for this is because my right hip is hurting and  nothing showed on the right hand side just the left.

So he says it may not be Avascular Necrosis, water on or in the bone, cant remember which apparently can be caused by a few things. So he suggests pain management and physiotherapy. Even after saying he DOESN'T think that what the MRI showed on my back should be causing this many problems as it wasn't seen to be pressing on the nerves.

I explained to him that I have gone from only having to use crutches on a bad day, to having to use a walking frame everyday. To now not being able to walk even to the toilet and having to use a wheel chair. That my legs and arms shake and spasm like mad and I cant control them when they are like that. That the back pain has worsened as well as the feeling of weakness in my legs. Could it be the disk has slipped further and is now affecting the nerves.

Oh well we use surgery on the back as a last resort. HELLO WHO MENTIONED WANTING SURGERY?! I JUST WANT ANSWERS! But his response was that even though I have deteriorated and am thoroughly depressed and struggle to manage with H and the hub cant keep taking time off work. Well I the only way to tell if the disk has slipped further is an MRI, I don't believe I can justify that. If you cant cope then you should phone social services.

Good job I'm depressed and stuck in a wheel chair because I would have bloody thumped the stupid idiot. After saying he didn't think it was avascular necrosis, he then contradicts himself. Well it very well could be the beginnings of it, it does look like it. I will order another MRI for your hips for a few months time and then come back and see me in 3 months so we can see if we think it is that!

Well it either is or it isn't. By this point I needed to get out of there. So I asked the other half for my handbag. I turned to him and said I want a second opinion from a neuro surgeon someone who deals with backs and nerves. Oh well you are entitled to that of course but don't expect to get a different answer. I doubt he will send you for another MRI but if he does that's his choice. Make your bloody mind up!!

So I left the hospital a crying snot monster. Took some painkillers and managed to sleep for 3 hours. I am awake again now and things look bleak. We had rung the GP to get them out but was told they only do visits for the elderly. Talk about ageist! What about the disabled?? I cant get to the toilet let alone down the stairs. So then the story was changed to that she isn't in today when I was told by Dr herself that the only day she had off was Friday.

I am supposed to have fasting bloods and an appointment at the docs but I know I wont make it. I have an appointment to see the gallbladder surgeon tomorrow, and I will be saving my energy for that.

I think when the doctor comes out I will have to get my anti depressants increased. I have lost the fight in me. I have got to the stage where if it wasn't for H and D I would just want to go sleep and not wake up. I don't see the point in fighting anymore. The book keeps getting passed around and I am left with no answers. No one seems to care that I have a young baby that I cant pick up because of this. That I am stuck in a bed and have to use a wheel chair.

I cant stop sobbing I really thought that today I would finally get some answers that today was the day that I would finally move forward. How very wrong. I feel like I have hit rock bottom and I cant find a way to climb back up.

The only option I see left is to either get myself admitted in to hospital to get things moving faster. Or pay for a private consultation, but what use is that if they can't get the notes or results of my MRI not sure how it works. Guess I will have to ask doc tomorrow. I know she is reluctant to allow me to continue on my pain meds, but even they only just keep it at bay so how the hell am I supposed to cope if they take them away.

Here's the list of problems:
Uncontrollable leg shaking (sometimes in both legs, mainly when standing)
Uncontrollable shaking in the arm
Hot flushes
Blurred vision in one eye
Double vision
Tingling in arms which leads to pins and needles and eventual numbness in hands
Vibrating sensation in my spine, legs and feet
Constantly tired and fatigued
Spine and Neck spasms
Never feel like my bladder is completely empty
Some days cant lift my feet up leaving me unable to walk
Weakness from thigh down
Bleeding from my bum
Stomach ache separate from gallstones
Persistent back ache, which only eases when laying down
Pain deep in buttock
Cant sit for longer than 15 minutes
Cant stand for longer than 3-4 minutes...
Cramps in front and back of legs

I don't think I have left anything out. There is no point in telling me to keep my chin up. Its easier said than done. This has got out of control. I feel like no one is listening, almost as if they think I am just a hypochondriac I'm not I would much rather be playing with my baby girl. Going for walks with her and my husband. Being able to live a normal family life. Instead I am left like this. What the hell am I supposed to do. Where am I going to find the courage to continue to fight this? Should I just give up and accept my fate that I may possibly be able to walk properly again?

Why should I do physio and pain management when they don't know what the problem is? Surely physio will make things worse just as it did last time. I know physio hurts for a while whilst doing it. But surely it isn't supposed to deteriorate your condition? That's what happened. Why should I have any faith left? If someone could please just give me an answer..

My dad has offered to kindly pay for a private consultant appointment. But if its anything like the nhs will anything get done?


  1. this may sound stupid but have they not tested for fibromyalgia? i have psoriatic arthritis very severly and just been diagnosed with fibromyalgia too the symptoms sound familiar x

  2. I'm speechless. How absolutely awful for you. Can't begin to imagine what you're going through. I'd say, if you can afford it, go private. They'll have you sorted out sooner rather than later. Many people think we are lucky to have a free NHS, but what bloody use are they when theyre leaving you like this? It's appalling that you're being expected to put up with this pain, absolutely degrading. In this day and age no one should be putting up with this.

    I went private last year with my epilepsy after the NHS couldn't give a shit whether I lived or died from seizures. It beggars belief.

    God bless, CJ xx

  3. Thank you both for your kind comments I think I will go private but its deciding which type of consultant and getting the gp to write a letter.. sounds like you have both been through horrendous experiences yourselfs. I am going to look up fibromalga sorry have spelt it wrong, to see about it. Thanks again x

  4. omg love, this sounds so horrendous, have you approached your local MP for support? or what was the PALS service at the hospital (patient liaison - can't remember what it changed to)? We had to use PALS because of the neglect my nan was suffering in hospital at the hands of the NHS and they really helped. I'm here for you anytime you need someone

  5. never thought to do that as i was told that the waiting list is normal. That even cancer paitents have to wait up to 2 weeks. My problem is getting a diagnosis and quick before things span even more out of control

  6. all I can offer is a big hug and hope that you get answers and a cure soon xx

  7. Good luck in getting some's shocking that you are not getting the help you need. x

  8. I hope you are given a diagnosis and much needed answers and treatment soon.x

  9. Thanks ladies. I have a private appointment on the 28th. Cross that I have to pay to get the treatment I need but I have also changed doctors as mine is about as useful as a chocolate teapot!