A huge introduction for my first post. But its such a complicated history that it needs to be to make sense. This is predominantly going to be a blog for me and my thoughts and may or may not make sense but its an outflow for me and my emotions and fears. It will probably also follow my journey to attempt to claim some form of benefit. I never realised how awkward and disheartening that in itself can be. 

Just today Ive had two letters one a ESA form and another a health assessment and both want a copy of my original sick certificate (no photocopies allowed) and both want it within the same time scale. So how do I do that?? Why cant one department send a copy of their copy to the other department? 

So yeah, I find myself with very poor mobility and lower back pain which has seen me out of work since Sept '14, with a brief return to work in Nov '14 before I lost the use of my left foot in december. That brings me to where I am today. Now for the long history into me and my body! 

Painful lower back when upright began in my mid teens and saw a chiropractor for a couple of years for that around early '90s.

Along side this knee pain became an on going symptom/side effect, hurts to have knees bent when kneeling and crouching on floor hurts within 30 seconds of pins and needles in feet and legs which increases to heat.

Damaged lateral ligaments in both knees early 2001 (ran up a flight of stairs left knee gave way, on crutches for 6 weeks and did the right leg in trying to get in a car on crutches!!) crutches for almost 3 months.

Physio at the time got the consultant orthopedic to do an mri which showed also small tear in meniscus. They noticed my knee caps where out of alignment also and was creating a new groove under knee cap. Repeatedly had knees taped up and they gave up after a while trying to adjust the knee caps. They put it down to Chondromalacia Patella and said re adjustments to life would make it bearable..... I was put on various meds over the years, co codamol, naproxen, gabapentin. noretriptyline.

Over the next 10 years I put up with knee and back pain. in 2012 I saw the pain clinic who gave me a left sided injection of steroids and anti inflametaries in lower back and in 2013 he did both sides a lumbar sympathectomy and burnt/cut the nerves to knee.

in the last 3/4 years Ive seen 3 chiropractors who all told me to go to GP and be referred to an Orthopedic team for the back pain. I also saw 2 osteo's who also said to speak with GP about it. Saw GP 3 times about the pain and what other professionals had said and each time refused a referral/referral was never sent.

I can remember around 5 years ago at work I would have trouble with my hands trembling and writing care plans. Difficulty changing bed sheets/duvets as fatigue in arms. I also had the odd sensation of not feeling my left foot below my knee and feeling unsteady on it when going up and down kerbs. At this point I was walking around 15 miles a day both with work and dogs. Mentioned to gp at a review and she just said to monitor it.

1.April 2014 my hands began to buzz and tingle as if I had clapped my hands together very fast and hard. If I put them in water-hot or cold it was like they were burning. Had trouble again with fatigue in arms with showering clients and making beds.

some time in May '14 my left leg began to buzz like a mobile phone was going off in my thigh. This continued daily to October. It was worse when driving and holding the biting point and Id often stamp my foot in footwell to get the feeling back-it wasnt numb as such but asleep??

Along side this my memory was getting worse, couldnt remeber door codes, dates of birth for clients and names of medicines etc.

Never had that in the 8 years previously in the job. I also began muddling up words and saying the wrong word completely not just a similar word but one that made no sense. I also stutter somewhat trying to find the right word and can forget what I am saying mid sentence! Husband notices this the most and I do it daily. He says I get a brain fog. I am more aware of it when I am tired.

saw a Gp in the August '14 she said I needed a neurologist and orthopedic referral. She first noticed delay on reflexes and moving toes upwards on Left foot

Sept 6th had mri, I had been on a dog walk that day and found it very difficult to keep up with the group of us, even a lady who was 3 days overdue was way ahead of me lol!!! First time I really noticed a struggle walking a distance I had done many many times previously.

Sept 7th woke up feeling I had fallen downstairs, my whole pelvis and sacrum hurt as if bruised and mobility was poor. Left leg felt heavy and got heavier as the day went on. By 3pm I couldn't sit or lay down comfortably and leg was almost impossible to move. Ended up A&E and after a cocktail of drugs I could lay flat on my tummy. They noticed the lack of movement in left foot but all they could offer was if I couldnt wee or became incontinent go straight back.

GP signed me off for 11 weeks and prescribed tramadol 100mg twice a day. They took me off the co codamol and gabapentin I had been on for the previous leg pain.

Headaches began 18th sept and I initially blamed the tramadol, came off all meds for nearly 3 weeks to see if made a difference, none made. GP prescribed Sumatriptan which didnt help and Amitriptyline which helped a little.

Back pain on going throughout, leg began to ease up after 6-8 weeks and physio.

Returned to work 9th Nov, leg began to get heavy and buzzing again, by 5th Dec I woke unable to move toes or ankle. Spent 4 days in hospital who ruled out lower disc problems and it was "unknown" discharged and went private to see Neurologist.

It seems Ive had lots of little bits going on over time and each time its got a little worse or lasted a little longer. this time since december is my longest bout of fatigue and pain.

Private neuro did a brain and full spinal MRI. results is no tumour or ms. He has said its an infection which has wiped out body and will take time to recover. Hes optomistic I will recover fully. GP says I may never get better!!

Before learning to drive '13 I had eye test in 2012 and needed glasses for reading and distance was fine.

I had my eyes tested again in July '14 as 2 years were up, no change to prescription.

When I was in A&E in the sept they mentioned getting eyes tested but I cant remember why but I remember telling the optician they had told me, maybe I was getting headaches then?

That optician wrote me a letter to take to gp asking to see the ophthalmologist but that never materialised and when I saw GP last thursday (12/02/15) she found the letter that had previously been missed by the gp and promised to send that asap and chase up mri report. 2 days later they had sent a letter and I am booked in to see the eye clinic team on 24th Feb at RSCH!!

Neurologist noticed eye issues but didnt explain them he just kept repeating the tests of focusing on his fingers and moving things.

On his report letter I got he wrote "both discs pale, unsustained gaze evoked nystagmus to the right also seen on fundoscopy"

Went for another eye test on 30th Jan after seeing neuro who agreed with what he has written in letter and to discuss with GP.

Ive noticed cars jump when driving and things moving cause me to refocus a lot and can be a little hard to judge distance. I see things out the corner of both eyes jump around such a phone screen or stair gate bars. If I wave hand in front of face it seems theres several hands in slow motion causing a shadow effect. I cant read this text with just right eye its too blurry but left eye is crystal clear. Optician said im no longer allowed to drive.

I saw GP again  (19th feb) and she says i am puzzling and she needs some time to go away and really think about what to do next or treat this. So for 2 weeks ive to keep (another) diary of everything I can and cant do. my pain score and mood. Then see her again in two weeks and go from there......

My biggest concerns are no one knows what is wrong other than saying its an infection. But they never say WHERE it is or WHEN i got it. They say its since I woke up in dec but what about the weakness is September? They havent treated me with anything for an infection and Ive had LOTS of bloods tests and not one has shown infection. Including whilst in hospital.

Ive had to quit my job as a carer as I cant drive and I am now needing a wheel chair if I leave the house as I dont have the strength to walk far and my back pain is too intense. I have to sit leaning forward to ease it. I also cant raise legs properly to walk, I shuffle and swing my pelvis side to side rather then hips frwards and backwards (normal walk)

Im 34 years old and a mum of a teenager and this has changed all our lives. husband has to fill in the gaps for me when im strugglign to think and speak and he needs to remind me about meds and support me with household tasks.

GP sent me a letter saying she thinks my blood glucose is fluctuating too much and causing all my symptoms and if I get that controlled I'll be fine!!! So now is it no longer an infection and its insulin based???? I am so fed up. I kept a diet diary for 3 weeks and saw her yesterday where she decided my diet and glucose levels are not related at all to my symptoms! Hallelujah 

She has upped my pain meds and I did find a difference in the strength of the pain yesterday. Now I am just waiting for the neuro physio appointment on the 24th. I am hoping they will have more of an constructive diagnosis and be able to help. But im not getting my hopes up yet! 

My biggest fears: This is as good as i am going to recover. That it returns, it returns worse. 

Its changed my life dramatically and i am struggling to accept that, Ive always been mentally strong and thinking something may actually beat me makes me cross/frustrated/scared. Gp acknowledges my mental strength, she knows some of the things ive been through. Im often told by people they wouldnt cope with things ive done/been through but I dont know any different so I cant compare it to them. 

I also think theres nothing I can do to change whats happened or on going, I cant control others and their actions I just have to live with whats going on and either let it beat me or fight it. Maybe I have a stronger fight mode? Maybe im too logical lol. 

So far, life has thrown at me: losing two friends when i was 15, one to suicide, another in a freak farm accident where I kept my horses. 

Becoming a mum at just 17. Living a very destructive and chaotic 7 years in a relationship with my sons dad. Watching him destroy himself with drink and drugs. A suicide attempt by him pushed me into leaving. Fighting him with solicitors and moving away from my job and friends was awful. Coping with a 6 year old angry with the world. 

Embarking on an infertility journey which lasted around 7 years and was unsuccessful. My biggest failure to date. 

Losing a very very good friend to cervical cancer when she was just 26 made me appreciate life so very much.  As does my Sister in law who lost her battle with skin cancer and eventually a brain tumour after a 3 year fight. She never moaned, she just charged at each hurdle and had the **** it attitude that sparks me on into digging deep and carrying on. 

I lost both step brothers aged 18. One to suicide and the other 3 years after in a car crash. 

Ive "survived" my husband having a battle with depression and finding out he had affairs. We separated for a year and I "survived" living on my own whilst these health problem began last year. 

Each time one of these events have happened its just been a case of I cant change any of it, get on with it. Its almost like reading a book when reading those back, it doesnt feel like my life. But since I was 16 its been a rollercoaster and maybe life has caught up with me?

I think thats enough for one post! So from me and my left foot (naff title but i struggled to think of a catchy name lol!) good bye :)