Neurologist part 2

Due to my worsening eye sight and neurogical problems I had an emergency appointment to see my neurologist on Friday. 

Now last time I saw him, it did not go well. He was patronising, arrogant and refused to do anything until I had cut down my meds. 

So the thought of seeing him again wasn’t pleasent! But I tried to stay positive and was determined to be open and honest with him, to say I need help and if he wasn’t going to help then I would refer myself to someone else. 

Well, I have no idea why but this time he was absolutely lovely! It’s as though he had a personality transplant or an evil twin that saw me last time! 

He was very honest and I appreciated that. He wants to help, and has put in for me to have an MRI spinal scan and any tests I think I may need in the future. 

He said.. “I believe you are very unwell. That you have chronic fatigue, ME, a neurological disorder brought on by my nervous system, Fibromyalgia, Endometriosis. I can look at people and know if they’re ill or not, I look at you and know you’re very unwell. That your immune system, rheumatoid, nervous system, muscles, well, your whole inner system is in constant turmoil and has made you very unwell.” 

I was shocked and said I appreciate him saying that, and is there anything I can do or he can suggest that will help me? 

He was very straight forward and said, there’s no cure for what I have. They don’t understand it enough, why it happens or how it happens. He is going to refer me to the Bath Specialist Pain Hospital and hope to ease my chronic pain. There is too much wrong inside to ‘fix’ me, all they can do is try to make me as comfortable as they can and I need to think about my future. To have carers in place, someone there to help care for me. Not to do major housework, any work that makes me exhausted. To move so there are no stairs, to do anything that will put less pressure and worsening affects on my health. 

He can’t say I will ever get better, that I am getting worse and that could ease, I may feel better for awhile, and my body calm down. But he’s not going to give me false hope that this will happen. 

He asked me to come in and see him in a few months time to see how I am and if there’s anything I need that they can help me with. He even pushed me in my chair out of his office after the appointment! 

I left feeling relieved that he now believes me, that he was totally honest with me and although he can’t cure me he will help if I need it. 

So, that’s that for now. 

I have to accept I’m not getting better yet, or ever. That I need to seriously think about getting a carer soon, need to move and have a place big enough for total wheelchair access, and think of anything I have to stop doing to help my body not be put under too much strain. And things I can do to help. 

The worse thing is telling people. For myself, I accepted I am pretty unwell as I live it every day and my worsening symptoms and new issues are very obvious to me. I know this will upset loved ones, and for me that is the worst thing. 

I guess, we always think there’s something in medical science to fix us. We expect to go to a doctor/proffessional and have them give us pills or treatment that will cure us. 

Chronic illness doesn’t work like that. It’s so complex, so individual that they really don’t know enough about it to even know where to start to help it. 

All they can do is try to ease the symptoms, and as the neurologist said “make you and your life as comfortable as we can” 

He also said that I really need accept that bed rest means bed rest. Not getting up doing housework, cooking, washing etc and resting in bed in between. Bed rest means total rest, your body is telling you to stop, rest and if you don’t you will suffer harder and longer. 

Habits are hard to break though eh! But I will start being better at looking after myself, asking for help if I need it and start seriously looking for new housing and a carer. 

Yes it sucks, yes I’m not happy about it. I don’t want to be like this, live like this, face the next lord knows how many years left of my life living this half life of severe illness and better days. 

But what option do I have? If I don’t accept it I will slowly but surely become bitter, angry and live in hate that this has happened. Which will solve nothing and make it 100 times harder. 

I will have days when I’m upset, frustrated, angry because I’m unable to do things so simple a child could do it. Definetly days when I feel I’m letting people down because I can’t be there for them as I should be because my body won’t allow it. Times when my legs and limbs don’t work properly and are swollen due to muscle and body pain. Blindness and constant headaches because of neuro problems. Days when I feel totally isolated and I can hear people happy and enjoying life outside while I’m stuck in bed unable to walk or move properly or without massive pain. 

Acceptance may take time, but it’s still life no matter how restricted. I wake each day and no matter how unwell I am, I still wake. I get to see my loved ones, spend time with them. Speak with them over phone or internet. Be in their lives and enjoy each new day as best as I can. 

Many people don’t get to do that, and I am grateful that I can. My life is very different to most peoples, but it’s still life. I am lucky that I still get to experience it no matter what condition I am in. 

🙂 

Neurologist result

So, I had my letter from the lovely neurologist I saw last month ( the word lovely drips with sarcasm).

Apparently I do only have half vision in my left eye, black spot covering the upper part of my eye being the actual result.

So at least that shows I do have neurological issues.. As brainy as I am even I couldn’t of psychosomaticed that! 😉

It’s a relief to have the proof though, and he has asked my dr to do more sight and prob tests to see why I’m now half blind in that eye.

It’s ridiculous that us chronic illness sufferers have to have the stress of proving we are ill and not imagining things or are hypochondriacs on top of everything else.

It’s exhausting to keep battling ‘specialists’ to recieve any kind of proper care or belief in our illnesses.

It’s as though some people think we enjoy being ill, because yes I imagined my life and future to be 90% bedbound, in constant chronic pain, spasms, seizures and massive migraines brought on by loss of sight . To not be able to function, spend time with my son, family and the guilt that comes along with the inability to be there as you want to be.
Seriously, when I looked to the future I thought yup, that’s the one for me..
Ummm…
No.

The progress I am making at the moment is brilliant and I am hopeful, but at the same time fearful of that hope incase I once again relapse and am back to square one. That the hope once again is taken from me, leaving me in a state of such anger, frustration and betrayl of my own body.

But I will try to quash this down, remain positive and working hard and hit away the fears with my walking stick 😉

Neurologist appointment

So, I went to my Neurologist appointment on Friday, and I have never been so insulted or angry in my life.. And that’s saying something! This is a long blog, warning in advance 🙂

It started out with him questioning me that I was Bristolian or not as my Father sounded it but I didn’t. I said I was, born and bred but don’t have much of an accent. He then said, there’s no way I’m as I have no accent.. I speak better than him! What the heck that had to do with anything I do not know, but he was rather adamant in arguing his case. I knew then and there I might have a problem during my appointment, and I did.

He didn’t read my notes, saying he didn’t need too. When I explained that I had been diagnosed through a specialist with ME and Fibro he replied that he would decide what I had, not the specialist.

He then asked questions about how I’m affected, when it started etc.. Then examined me briefly.

His decision.. I need to cut down a quarter on my meds before he will see me again as he can’t see the ‘real’ Stacey only the medicated one.. Also that I might think about seeing someone in physchiatary.

I stopped him at that point, saying the reason I look like a druggy today is because I haven’t slept in two days.. Cutting my meds to a quarter would take me back a year and leave me totally bedbound and in agony again. That is he suggesting what I have is psychosomatic?..
He flustered and spluttered and said yes he thinks there’s a chance it could be..

So apparently I’ve made myself like this, the spasms, cramps, loss of feelings in my limbs, sezures I have somehow created all this through the power of my mind. I then explained I am 4 years trained in therapy, physchiatary, psychology.. That it would be impossible for my mind to make my body jerk, freeze etc

He continued to bluster, and became annoyed that I stood up to him and outsmarted him. He said oh but I’ll give you bloods today and a flicker text for your eyes! Yes, I replied then it’ll be 3 months before any tests, help until I’m ‘clean’ of meds and the psychosomatic illnesses I have.. Regardless of two specialists diagnosing me you, you sit there and instead of helping me with your ‘experience’ and ‘qualification’ as a neurologist you use arrogance, ego, a lack of psychology, no empathy, no reality of the truth that you are not only looking at but which are in the notes you so easily dismissed.
I will have your blood tests, the same I’ve had for over two years and flicker test but I will not be patronised by someone who clearly has no interest in giving me the tests I actually need to rule out MS and epilepsy. I came here for help and advice, not even a cure but I now leave with a sense of frustration, anger and lack of respect for someone who has not only treated me as though I am a junkie, but as someone who you won’t help until I do what you want.
I may not be qualified as you are, but if I were and the tables were reversed I would not treat you as you had me.
Maybe before you see me next time YOU can not only look through my notes but polish your bedside manner because it is sadly lacking.
Good day.

I wheeled myself out and used every bit off will power not to use my one good hand and put it round his throat! Lol

I spoke to my dr about it and she totally agrees with me, that cutting my meds back will cause huge bad effects on me and that only I can decide what to do and she will back my descion whatever it is.

I’m so thankful for her, for someone in the medical profession to back me and laugh at the total idiocy that I have made myself like this. She found it as ridiculous and said, well then he is also saying myself and the 4 doctors who’ve been called out to see you when you’ve seized, had spasms etc are fuelling your ‘derangement’.

I will see him in 3 months and prove him wrong. I will have every test I can and if he still refuses to help then I’ll put in a complaint against him and change to another neurologist.

My body may be disabled but my mind and myself are not.

I’m a person, a human being, not a statistic to be labeled psychotic put away in a file as quickly as possible and forgotten about because it’s easier than putting the work into finding out the truth.

I’ll get the truth and diagnosis I need if it kills me, because this is my life, this existence has become my life and I want to know why, what is going on so I can work with it and live to the best ability I can. I don’t care if someone has a thousand letters after their name, until they truly understand the hell life can be living with chronic conditions they don’t get to patronise us or push us aside. Treat us as though we are ‘mental’ and put us into counselling to cure the psychosis.

Yes it’s difficult to be strong when you’re so unwell and they know this. This is the first time I’ve ever had someone suggest it’s all in my head, but I guarantee it’ll be the last time.

🙂

2015

I like the fresh slate of a New Year. Everything that happened is in the past, even something last week happened last year.

Just a day after my last blog entry I was put on a 3 month course of antibiotics for a sinus and ear infection as I woke with a swollen face and leaking ear again.
My Doctor is determined to rid these infections I’m constantly having by having me on a strong dose for two weeks then just one tab a tab after that.

I think this an excellent idea, especially as these infections make my conditions so much worse. Fingers crossed it works 🙂

As my Neurologist appointment is on Friday my doctor won’t try any other new meds until after the appointment, which I understand. I have a telephone appointment with her a few days after to discuss what happened during the appointment and where to go from there.

I’m looking forward to the appointment and do hope it will help me. I’ve not had much luck with specialists, both my rheumy and pain clinic signed me off as unable to help. This really frustrated and exasperated me, the very people who were supposed to help couldn’t figure out how to.

But, the neurologist appointment brings new hope. They may be able to help me and make things a lil easier, or at least give me a solid diagnosis that I can adjust with.

I’m pretty tired at the moment as I’ve hardly slept in days, there’s just no way you can sleep when you’re in pain. I will eventually crash out and sleep, fingers crossed this happens very soon! 🙂

Nearly Christmas!!

Happy Christmas Eve! 🙂

Regular readers will know I love love love christmas! The fact it is Christmas Eve marks my behaviour incredibly festive and happy!

I am going to my parents for lunch then I’ll be home in the evening. A good friend of mine is taking me and picking me up, which I’m incredibly grateful for.
This is one of three friends I have left, who didn’t disappear when I become very unwell.
Although it upsets me that I’m unwell he goes out of his way if I need anything or to chat. I really appreciate it and although I’ve only three friends left, I know they’re true friends which means more to me than having twenty false friends.

My sons Birthday went really well, I got up really early to give him his gifts before he went to work. He expected to work until late but he had finished by 10am so he got to spend the day split between my parents, his girlfriend and me. We had a lil party tea then take away in the evening. I’m really pleased I got to see him all day on his birthday.
He turned 20 years old, which to both of us seems incredible. Him because he feels old, and me because I have no idea how the years have flown and I now have a 20 year old son!
I enjoyed every day of those years and everyone knows how proud I am of him, and how much I love him.
Being a single teenage mum was the best decision I ever made, and I cherish those years and the ones yet to come with my son.

Health wise, I’m much the same.
But I have finally recieved my neurologist appointment for 6th January!
I’m so pleased about this!
Hopefully I can finally get some answers about what is going on with my brain!
I’m still have ‘fits’ several times a day, loss of vision, memory problems and serious issues with forgetting what objects are, used for, words , mixing sentences up and inability to write properly.

I haven’t been able to speak to my doctor as she was away and then I can’t talk to her for another three weeks as she’s fully booked up.
I need to talk to her about trying a new painkiller that was suggested to me, thank you Fern :), and blood tests to check my white blood cells, muscle mass swelling and any tests to rule I’ve not developed anything else.

Four doctors are now saying they think I’ve been mis-diagnosed and I have MS, due to the severity and type of symptoms I’m developing on top of my usual ones.

I now constantly have the ‘hugging’ feeling in my chest which leaves me constantly breathless and is causing problems with my breathing and all day palpitations. I have also started falling over or bumping into things. My balance which was never great has escalated to feeling dizzy and unable to keep my balance at all.

Whatever the outcome I’m prepared for it. If it is MS then I will cope with it as best I can.
The symptoms are so close to ME that it won’t take much more alteration in my life than it already has.
Hopefully the neurologist will help to clear up this issue too.

For now, I’m happy and excited for Christmas!
Spending time with my family, my partner is going to be brilliant.
It’s not the presents, although it’s nice to recieve gifts 🙂 for me it’s about spending time with my loved ones. Something that I can’t do very often now, and I appreciate the times I can more than ever.

I wish all my readers a very Happy Christmas and hope you can enjoy it as much as possible! 🙂