Immense pain but on bright side I have my hospital appointment

Hey everyone,

I've finally got my date for my eye test and lumbar puncture, both will be done on the 9th of December. My eye test will be done in the morning in the eye clinic then a walk over to the day surgery were I will have my lumbar puncture in the afternoon.

This couldn't have come any sooner as my three day intense pain came to a head this morning where I was in extreme pain and was passing out from it. Both me and my husband know that there was no point calling the doctor or going to A&E as they would just send me home saying I have a chronic disease and to go back to my GP.

When appointments are few and far between how am I suppose to get help quickly? If I had an injury that they could see I would be treated straight away but because they can't it means I'm not in pain. If I'm in so much pain that I'm pass out and throwing up because the pain was so intense why can I not receive the help I need?

The last time I called an ambulance it toke three hours for one to come and when it did the paramedics so shocked at how much pain I was in. They gave me gas'n'air and then tried to get me to walk out my house and down to flights of stairs to the ambulance, it was so painful I passed out. They ended up giving me morphine and the gas'n'air just to get down the stairs!

Once I got to the hospital they checked my observations kept me there for four hours as I had morphine and bounced me back home even though my medication wasn't working they never came me anything to help, I just had to deal with it.

I am hoping that things don't get any worse even though I know it is, I hate having to deal with the hospital but I can't deal with the pain either. I hope that I get my appointment to the pain clinic soon.

Pray for me.

Thank you for reading xxx

Frustration does not equal depression

Hey everyone,

Here I am at 2:45am laying in bed in so much pain and talking to you guys to keep me sane and distracted! My body temperature is hot but if you was to feel me then I would feel at a normal body temperature, because of me being so hot I have the extreme burning pain. Its mainly in my arms and legs and the worst pain is in my right knee which feels like someone has poured hot water all over it and every time I move it, it extremely hurts. It even hurts if you just brush my body so (I'm sorry to say!) I'm laying naked with no covers on my bed just trying to relive the pain in anyway I can.

As I was laying in my bed trying to fall asleep I began thinking about my sleeping pattens. One minute I can be sleeping so much that I miss out on my days, to not being able to sleep. I usually take Amitriptyline at night as a pain relieve and to help me sleep but lately it has been making, me sleeping to much worse. 

I was thinking about what the neurologist said about me sleeping all the time because I'm " severely depressed". If that's true why do I feel fine? I've suffered with depression on and off for a long time and I felt "down" earlier in the year so I went to my doctor and told him I felt depressed and he put me on a months worth of anti-depressions and I've been fine ever since, surely if I felt depressed I would do the same?

Then I realized a patten, whenever I've got frustrated and angry about my condition and the lack of help, they always tell me I'm depressed, frustration does not equal depression! I have been told several times that I'm "depressed" while I've been frustrated.

Earlier in the year I had to call a ambulance and go on morphine once a month for 3/4 months, the last time I was in A&E I got frustrated as I thought that they should just admit me into hospital and they would be able to do the test quicker and sort my pain out at the same time. When I begged the nurse to admit me through tears of frustration and pain she told me that my observations where fine and then she started to patronise me by talking to me in a baby voice, like she was talking to child saying, "there, there" and "I know".

No you don't know, nobody can possibly know what it feels like unless they've been through it themselves and you obviously haven't over wise you wouldn't be treating me this way. She then decided I was "depressed" and need Diazepam to "calm" me down. I was groveling to her to help me as being in that much pain you will do anything especially if you know that, that person has the means to take the pain away. How can anyone with an ounce of compassion turn and walk away from someone who was in that much pain begging you for help, I'm mean have I lost the plot here or was the whole point of nursing and medical care was to help someone in need?

I'm not depressed I'm just frustrated at going no where and when your in this much pain on a regular if not daily basis you would be frustrated to. 

I'm not looking forward to the lumbar puncture either as it gives you excruciating back pain and makes already back problems worse and I've come off the Tramadol also it gives you extreme headaches and I suffer with sever migraines every month were all I do is throw up from the pain.

I don't think I've told you, when I'm in a lot of pain, I throw up. I've been sick all the way through my labours and had to be given at least three anti-sickness injections before I stopped. I would like to think (and been told) that I have a very high pain threshold and when I get to the point of throwing up I'm in serious pain.

I've had an 8lb and 8lb 4oz babies and have delivered them both on gas'n'air alone, so to be begging a women for relive as I can't stand the pain and thinking of jumping of a roof, thinking of death as a relief from the pain, then you know I'm in some serious pain!

I wake up every morning hoping I won't be in that amount of pain so night time is a real issue for me as I don't know how I'm going to wake up. Some nights I'm terrified to close my eyes, praying that the night is prolonged. 

I'm going to try and close my eyes and sleep now, as I've got a ton of things to do tomorrow. I'm still a wife and mother at the end of the day and my duty calls regardless of how my body feels.

Its now 3:45am.

Thanks for reading xxx

Is bad news still news?

Hey everyone,

I've decided to stop watching the news as since this government has come into power it has been nothing but gloom and doom. We have the cuts, social housing, immigration, train prices, North Korea and South Korea, Ireland bank crisis need I go on? I mean the only "good" news is Prince William's and Kate Middleton (well it is good news for me as its my birthday which is now a bank holiday yay!).

I do want to know in a way what is going on in the world but life is so grime right now I'd rather have a good day and forget about whats going on then be plastered to the t.v and become depressed. 

I know things are really bad at the moment but life is hard for me enough as it is especially with the cuts that worrying about the rest of the world. Things do grab my eye though and they do scare me. 

I have signed as many petition as I can to help a number of causes, many being for disability as I think the main fall has come on the disabled and low income families. I don't think these petition's will work though as I don't think the government cares or takes things like that seriously as they know that the cuts are going to upset people, I think action is needed.

I think protest's are good, they get things done and if the nation gets behind something against the government they will have no choice but to change. I think disabled and low income families need to get together and really campaign against the cuts. The bankers and rich would got us in to this mess in the first place will still go home with their Christmas bonus and enjoy their huge presents and feast on Christmas day but those of us on the lower income will struggle and probably get into huge debt just to scrape a "nice" Christmas, how is this fair?

Think about it over this Christmas, we need action people and hopefully in the beginning of the new year the tide will change.

Thanks for reading xxx  

Pretty shoes and a night out

Hey everyone,

My husband decided to treat me this week because of all the stress I've been through by buying me a lovely pair of new shoes!

They are gorgeous! The only problem.......I can't walk in them. Its not because they are to high, its because my legs are to weak and I don't have any balance.

I used to be able to walk in shoes like this all the time, in fact I never owned any flat shoes, now my pretty shoes just sit in the draw only to come out for me to admire them.

My husband also decided we needed a night out.

Friends of ours do karaoke as a side job (and are very good I must say!) and they invited us to join them at a local pub, my husband decided we should go. We asked his mum to babysit and she said yes and we had it all arranged that both boys would stay at her house but when it came to the day my youngest son became ill.

We went out for two hours as my mother-in-law had work the next day so my youngest couldn't stay, we had to cram a whole nights drinking and socialising into two hours.

What can I say? I'm feeling it today and my body aches but it was nice to let go even for a little while.

See you soon and thank you for reading xxxx

Hey everyone,

Sorry I haven't blogged in a while as I've been asleep most of the week and my dongle broke so had no Internet when I was awake.

The stress of last week with my son's birthday, family over for dinner and my neurologist's appointment has knocked me for six and I've been sleeping most of this week till three in the afternoon and going to sleep quite early.

I've been going over the neurologist's appointment over and over again in my head, it just doesn't make sense at all. I feel like I belong in the film One flew over the cuckoo's nest by repeating "I'm not depressed, I know I'm not!" to everyone I know. I've suffered from depression on and off since I was a young adult I think I would know by now when I was and if not me, then my husband! 

Its frustrating to feel like your screaming and yet no-one seems to batter a eyelid at you. Why do doctors have to make things twice as hard? You are constantly battling with them just to be heard and then when they do finally hear you they say "why didn't you say that before?" Annoying!

I'm hoping that the lumbar puncture finds what ever is going on with me and that its all resolved soon over wise I don't know what I'm going to do!

Thanks for reading xxxx

Ten ton weight comes crashing down

Hey everyone,

I went to see my neurologist today expecting to get an answer instead I left feeling really disappointed and angry!

I didn't sleep a wink last night worrying weather or not it was going to be bad or worse news, so this morning I was a bag of nerves waiting for the time I had to leave. I had been going over and over in my head for four months what the result would be. I debated with myself and looked at it from all possible angles, so this appointment was really important to me. I've never been so scared in my life about anything like this and this morning, that ten ton weight crashed down on me but didn't completely crush me?

We arrived on time for my appointment and waited for the nurse to do my blood pressure. I was shaking like a leaf when the nurse was doing my blood pressure, I'm surprised it wasn't through the roof the way my heart was pumping! Once she had finished that we were directed to sit outside the consultation rooms. There were three registrar and my consultant (I found out later) was working but it still toke forty-five minutes to be seen.

While we were waiting my consultant came out to call a patient, this was the first time I had ever seen a consultant! I got to look him in face for all of two seconds! Me and my husband was shocked to see he was working and it gave a fain hope that we might be seen by him, we were severally disappointed. He came out of the consultation room and picked up the files of people waiting to be seen. I got a flicker of excitement when I saw him pick up my folder and flick through it, then my heart sank when I saw him putting my folder back and calling someone else's name.

A registrar called my name and I walked into the consultation room. I had prepared myself before the appointment by writing all my symptoms down, wrote out questions so I didn't forget and had my report from the optician all ready, I shouldn't have bothered. He asked me if I was told anything about my condition, I said that I was told that I had small fibre neuropathy and that I was to have blood test and a MRI brain scan. He asked me if I had been sent the results, which I hadn't so he told me my blood test was normal (which I had gathered anyway) and that the only thing that was lacking was vitamin D, my brain scan on the other hand was....

Normal! I couldn't believe it, they had found nothing wrong (as far as he says but I don't trust that because he only skimmed the results, not read them fully) I was so shocked and I thought that's it, its worse! I then started to panic spitting out "but what about my eye?" he said to me "whats wrong with your eye?" I began to explain that I have blurriness, double vision, nysrigmys (which is your eye shaking) and pain centred in my right eye mainly. He looked at me with a kind of smirk on his face and asked, "what do you mean by your eye shaking?" I said that my eye shakes and gave him the report from the optician. Again he just skimmed over it and dismissed it.

He began to look into my eye and do small eye tests, he used a red pin and I had to focus on his eye and tell him when I could see the pin. While doing these test he held two fingers up (I found out later) just to the side and asked me "how many fingers am I holding up?" I said "three!" When he had finished he said that my behind my eye was swollen and that I had "Functional neurological symptoms and that with physiotherapy within a year, I will be fine and back paying Income tax" That's his exact words and sums up completely what he thinks about me!

He looked at me and thought "yeah OK she's twenty three, married and got two kids, she's a benefit scrounger!" It wasn't just that, that made me come to that conclusion, he asked me if I worked, if I've ever worked, when I gave up and if my husband worked or had! That was none of his business for a start, and I don't see what relevant it has to my condition! I know why he wanted to know because he thought that I had just made up this condition just so I could claim disability benefit. Now I don't know why people would choose to defraud DLA as it is one of the hardest to claim even if you have a medical condition.

I went in there paper in hand, ready to ask my questions, how many did he answer? none! I asked him "can I get help with my spasms and aching cramp like pain?
"its part of your neurological condition"
"can I get help with fatigue?"
"its part of your neurological condition"
"can I get help with my eye problem and maybe a referral to a eye specialist?"
"emm"
"can I have a referral to the pain clinic?"
"emm" The best one was "am I under a neurological team?"
"of course you are, if your under Dr. Foster then your under a neurological team"
"well then can I see an Occupational therapy"
"what for? Occupational therapists are for when you work" No their not!
"well I've contacted my local social services but they want to know if I'm under a neurological team as I won't be using their services"
"what for?"
"well their going to help by doing adaptations to my flat"
"you won't need any as you will be fine in a year"

So as you can see I got really far! He reckons with a year's worth of physiotherapy that I will be back to my good old self!

He gave me a website to look at, which describes what he thinks I have,
http://www.neurosymptoms.org/ this is bull-crap! (excuse my language) its infuriated me as it hasn't got anything to do with my condition, all his done is take some of my symptoms and seen that my tests have all come back normal. The thing his "suggesting" that I have is to be diagnosed through bed tests which he never did only checked my eyes.

I challenge anyone to take my symptoms and find a neurological problem that isn't MS!

Symptoms:
Eye:
Eye pain centering in my eye and going towards the back of my head, double vision, blurring, eye shake, its mainly in my right eye but can affect my left, when I move my head quickly I see flashes like camera flash or lightening,
Burning pain:
Chest, arms, hands, fingers, lower tummy, groin, legs, feet, toes
Aching cramp like pain:
arms, hands, fingers, leg, knees, feet, toes
Numbness:
arms, hand, fingers, waist, (sometimes) legs, feet, toes,
Weakness:
arms, hands, fingers, legs, knees, feet
Spasms so bad they keep me awake or unable to rest,
Twitching in my eye, head, arms, hands, legs, feet,
Foot drags along floor while walking,
Loss of coordination,
Forgetting were my feet are mostly,
Shake when doing fine motor skill movements,
Vertigo,
Bowel and urinary urgency,
Memory Loss and forgetfulness,
Panic attacks,
Depression,
Mood swings,
Fatigue,
Burning pain gets worse with heat,
My hands and feet are always cold,
Eye pain gets worse when tired,
and recently I'm having trouble swallowing.

I have one more chance to get a diagnosis as the one good thing his done is sent me for a lumbar puncture, I will have that in two weeks (depending on when the hospital sends the letter) and hopefully, fingers and toes crossed there will be an end to it all.

Thank you for reading xxxx

My son's birthday!

Hey everyone,

My son's birthday didn't start of in the greatest of ways, we had a huge argument the night before as he came home from his nan's and started crying. He wanted to stay at her house for the night and didn't want to come home, so I toke great offense to this and ended up losing my temper with him.

This morning started with a more positive note, he and his brother woke up about 8:30am. They came into my bedroom and sat with me while he opened all his presents after he had finished they let me fall back to sleep as they knew I was exhausted and I love that about them!

My son was 6 today but his a very mature 6 year old. I feel guilty about being sick and him having to take a certain element of maturity, as his having to deal with the fact I'm tired all the time, taking medication and seeing his mum in a wheelchair.

When I woke up we spent the day playing with his presents and spending the day together. In the evening we went for a lovely meal at Pizza Hut which he enjoyed!

Tomorrow I have my mum, step-dad, younger sister, older sister and her kids for dinner! God give me the strength to deal with entertaining so many people and give my husband strength to deal with cooking for so many people!

Thanks for reading xxxx