A new chapter

Hey everyone,

First I want to apologise for being away so long but the last couple of months have been a mixture of being ill and being busy. After my last LP back in May I found that it only gave me a little amount of relief of my symptoms and not for very long as they came back with a vengeance. I found that although the pressure had released a little I was still having really bad headaches and eye pain as well as my neck and shoulders been really painful. I also had my joints progressively getting worse to the point I was just laying in my bed crying.

With pain comes depression. I found that I sank into a self pity hole and found days turned into weeks of me just not being able to be compassionate to others. I tried my best but I felt really selfish and full of self pity that I couldn't bring myself to give other sufferers words of support and comfort or to even search for that for myself. I spent days just laying in bed in pain or sleeping still trying to pretend I was still my positive self but the only one I was really honest with was my husband.

I guess my mood toke a turn when I decided to watch Terry Pratchett "choosing to die" (I haven't finished watching the programme or if I ever will because of the thoughts I had) and I actually fully understood why they chose this path and was at a point where I wanted to give up the fight myself, I even went to the point of going onto the Switzerland's centre's website to enquire.  I was devastated when my husband spent Father's day nursing me rather then us showing him we appreciate him then days later ending up in A&E where they dismissed me entirely not even looking into my eyes to see if their was high pressure there, I was at a low.

So at that point I decided I needed some time out. I needed to get my head straight and back in the game. I needed to realise what's inportant and what I'm fighting for. I'm 24 I still have most of my life to live, I have to watch my kids grow up, get married and have kids of their own. I needed to know what I would be missing. I spent more time with my family and eventually pulled myself out of this dark time.

I also found another reason for fighting, I had something I could give. Though speaking to the wonderful Heidi on Twitter (I have IH) and asking if there was anything I could help her with as she was stressed I became admin of the I Have IH website and began supporting other people with IH either newly diagnosed or just looking for support and a place to vent.

In talking to Heidi she shared her vision of I Have IH becoming a charity set up to help people with IH. Through sharing her vision she asked me to join in to help her active her dream. I said yes and have spent time talking to her and finding ways to active her goal's as well as help her run the website and I must admit its giving me strength by helping people.

From being quite positive most of the time I've found by being supportive to others they in turn lift me up because at the very least what I'm going through I have more understanding and compassion to help someone else so it doesn't seem useless to me, it doesn't feel like I'm suffering for no reason.

So that's what I'm up to at the moment! xxx

www.ihaveih.com

so here's to writing my own book!

Hey everyone,

Just wanted to let you all know I've started writing my own book. Yay me! Its going to be about living with a chronic illness and IH, its also going to have some of my life experiences and stresses. Its going to take a lot of hard work as my head doesn't always let me focus on writing and I'm properly going to have my arse sued from "family" members who aren't going to agree with the truth in my books or how the way things happened but I need to be truthful.

So wish me luck everyone and I'll keep you uptodate on how the books going!

As your my loyal readers I've decided to show the first page of my book! Hope you enjoy xx

have decided that I'm going to write this book not as an autobiography but as nonsensical ramblings from my broken and battered brain. Its to hard to think of sensible things to say, witty banter and to portray myself as a strong, independent, power women who would give Lord Sugar a run for his money so I decided to go with the best way my brain can make it.

My brain has ceased to be so much that most days I can't even remember my name. Like today for instance as I was trying to think of away of starting this book my husband kept talking to me so instead of telling him that, what came out of my mouth was "I'm trying to think of things to think so shush!". I could ask the same thing over and over again where I've forgotten I've asked or completely forget a date and time of an appointment the moment I put the phone down. It takes me ages to follow instructions (which my husband takes great joy in) and I can get my words all muddled up like asking the shop keeper for a packet of crisps instead of a packet of cigarettes. I've forgotten if I've taken my medication and when, I've even got my son's name's mixed up or completely made up a new name for them. I tend to get my Husband's name and my son's name mixed up as they both start with M. I tend to get the same first letter of the word but the word that comes out can be completely different and have no similarity to the word I'm trying to say. People who don't understand tend to get confused or laugh but the way I see it if you can't laugh at yourself someone else will so you might as well join them.

My life wasn't always full of funny antidotes and lost memory. I wasn't always like this, I had a reasonable amount of intelligence although I didn't quite get the grades in school more for the fact I played truant a lot. Despite not getting the grades in school and living with Dyslexia I managed to go to college and get a job as a Dental Nurse. I met my Husband in High school when I was fifteen and we married in 2008. The biggest achievement I've done is becoming a mum to my gorgeous boys Malakye and Jayden. For awhile life was great, I couldn't of asked for anything more. My life was sorted, I was were I wanted to be. I had the love of a good man, a home and my boys to keep me happy and active. I had a job I loved doing and everything was going well. Then I became ill and things began to take a turn for the worse. In truth that year was the worst year of my life although there were some good parts of it most of it was like a bad dream I couldn't wake up from. Life as I knew it changed forever all in a single year.

Where has Britain gone?

Hey everyone,

Where has Britain gone?

I am very patriotic person and love this country so much. I'm a huge history buff and Britain is steeped is so much history you can't even look out of your window without a story being there. There is so much beauty this country has to offer, so much so that thousands of men gave their lives for it and the beauty of the white cliffs have given so many hope and pride.

So what has happened? We have a government that are doing a Nazi-like hate campaign against the disabled, a government that is widening the class gap that only the rich and super rich prosper while the poor are left to rot. The MP's are walking around like their Lord's of their manor sitting in their summer house while the "common" people have their houses bulldozed to make a "better view".

We have an MP who down plays the seriousness of Rape giving men the excuse to abuse women knowing the Law and the government are behind them and another who claims sexual child abuse is solely the fault of the child and they should have just said "no". They also have the very sexiest notion that only girls should be taught abstinence.

Its been awhile since I was at school but as far as I know they still teach History so surely they should have learnt from past mistakes? Things change for a reason, because their not right. The whole reason parliament came to be was so the people had a voice against the monarch who had to answer to someone else besides himself. The NHS was established so that everyone regardless of your financial status was entitled to fair and quality health care. 

We have come along way since the days where women were treated like objects chained to the kitchen sink to stupid to make a decision on how to run this country. We have come a long way since the days where the common land was taken away and the children staved to death to feed the aristocrat sitting in his mansion or for his wife to decorate her hair. We've come along way since the days when you were killed for the colour of your skin or your genetics. We've come along way since gas chambers and work camps so why does this government proceed in dragging us back into the dark ages?

I'd hate to think that David Cameron and Nick Clegg sat in History class relishing in the ideas of old but I just don't think they grasp the true nature their ideology is creating. I'm not saying that running this country is easy and I do understand hard decision need to be made but the reason their called "lessons" is because they teach us something. All those that made the mistakes in the past felt like they were doing the "right thing" at the time or they didn't realise the true nature and consequence of their actions. So I implore both David Cameron and Nick Clegg to reconsider what they are doing before generations in the future are learning in History lessons the true nature of their crimes.

People are suffering due to your idea's! Stop before it goes to far.

Dilemma

Hey everyone,

I have a dilemma, last Thursday (12/05/11) I ended up in A&E after four days of a high pressure headache and two months of high pressure symptoms. I ended up having a lumbar puncture with my opening pressure being 35 and closing pressure 18 (normal CSF pressure is 15).

My dilemma is that I need to take Acetazolamide to keep my pressure down problem being it makes me ill. The side affects are terrible! I ended up throwing up and feeling nauseous all the time. I was constantly thirsty (more then normal) and was going to the toilet more then a pregnant women. I could eat or drink anything due to the sickness as well of tasting nothing but metal, I also had really painful pins and needles in my hands and feet like an electric shock.

These side affects on top of the symptoms I have is awful but the difference between my symptoms and the side affects is that I can stop the side affects by stopping taken the medication. Only one problem I need the medication to keep my pressure down.

So what do I do? Do I not take the medication and run the risk of my pressure going up and going blind (although the pressure could go up even with the medication) or life with the side affects but lose the little life I have left?

I sleep a lot, am constantly in pain and hardly there for my boys as it is so I don't want to miss out of more time with my boys due to something I CAN control. My neurologist, neuropsychiatrist and GP want me to go back on the medication but I just can't seem to bring myself to take them, I want to keep the little bit of life I have.

I wish there was other treatments to IH instead of horrible medications and surgery. I don't want to have a shunt and I don't want to take the medication but my only other option is having regular lumbar punctures which is bad for me and I'll have to live with the side affects of them.

IH sucks!

Pain, pain and more pain

Hey everyone,

All I can think of lately is pain. I'm in unbearable amount of pain everyday with no painkillers to speak of and I'm coming to breaking point with it.

I am proud of myself for not being down A&E everyday (although I couldn't even if I needed to as I have no-one to look after my boys and I can't go alone) I'm in so much pain all I can do is lie in bed and my only outlet to moan is Twitter.

I can hardly walk from the pain in my legs and feet, I have joint pain in my knees and feet, burning pain, pin prick stabbing pain in big toes, muscle pain and pain from spasm's. I also have similar pain in my hands and arms.

I have recently been assessed by social services OT and they have decided that they will heighten my sofa, put a bar in the bathroom, a bath seat that will lower and lift me in and out the bath and a commode, ultimately that's all they can do for now as my flat is inadequate for my needs.

So I can't wait to get my commode (although I'll feel 80 years old using it!) as I won't have to make the painful walk to the bathroom as my flat is to small to be taken in the wheelchair.

The OT is also going to write to the council and ask to have us moved to a more suitable place but I'm not feeling like she'll have any success as due to the fact I've been taken off of pain medication (due to IH) the councils medical officer has said I'm "better" and deducted 10 points which leaves us with 20 (you have to have a least 90 points to be considered for a new home).

So basically I'm feeling rather rubbish and need some pain medication. I can't deal with being in this much pain anymore, I've hit breaking point. I need some help, some real help.

Rant over...

Falling between the cracks

Hey everyone,

I seem to be falling in the cracks when it comes to my medical care. Recently I have been taken off Gabapentin which was the only pain medication I was on other then Amitriptyline at night. The reason I was taken off Gabapentin was because it wasn't working anymore and I was taking them for the sake of taking them so along with the say so of my neurologist I stopped taking them. The problem being they were never replaced by anything.

I'm on nothing but Amitriptyline at night the reason being because my GP and neurologist have no idea which pain medication will affect my IH or not. I was on Tramadol for 8 months during that time it was making my IH worse and made my migraines chronic, the neurologist wrote to my GP and scolded him for putting me on Tramadol and since then my GP has been reluctant to put me on anything else.

The people who will know what medication will affect my IH or not is the pain clinic. The pain clinic is designed to help those with chronic pain manage their pain and get their lives back. They study which medication does what and what medications can coincide with each other and cater medication for a specific patient. The pain clinic would be an ideal place for me but the referral cost's to much money.

Yes my care comes down to money. With the government's new shake up with the NHS the hospital can't do referrals, there is a new policy stating that consultants can not refer to another consultant. My GP is refusing to send me to the pain clinic because it cost £500 for the referral and he just doesn't see that I'm worth the money. He said to me that he can do all the things the pain clinic can do but when I asked him to prescribe me something for the pain he said he needed direction from the hospital and started backing out of the conversation mumbling something about the hospital needing to treat me and find out whats going on.

Although I do agree with him I need help in the mean time with my pain. There is only so far my pain barrier and determination can take me. I have a high pain threshold but at times I really can't cope with the pain and end up in A&E or laying on my bed crying wishing I could die. I need help, I can't keep falling through the cracks but there's nothing I can do. The government has already taken the PCT away from our area so there is no one to complain to, there's no one to control the GP's. I'm stuck trying to convince the GP that my pain is worth the money and referral to the pain clinic.

Yesterday (11/05) I ended up in A&E due to high pressure from the IH, I ended up having another lumbar puncture. My opening pressure was 35 and refusing to go down it toke them at least 30 minutes to get it down to 18. Its been only 5 months since my last one and again they had to rush to save my eye sight. I need help with dealing with high pressure headaches when I have them and dealing with the other neurological pain.

All I want is some help is that to much to ask?

My birthday weekend!

Hey everyone,

It was my birthday on the 29th April and I went out both Friday and Saturday. On Friday we travelled down to Battle where we visited Yesterdays World, Yesterdays World is a museum built to scale streets of the past. The kids loved it, they enjoyed walking around real rooms and streets learning about history and my mum and step-dad enjoyed going back into the past too.

Its a fantastic place to visit the only downfall (and liturally

 the only downfall) is that the beginning of the museum is built in a lovely medieval house which can't be adapted because its a listed building but everywhere else in the museum is fully adapted for disabled people and the workers are more then helpful. We also (as it was the Royal wedding) saw replicas of the Crown Jewels.

If you have kids I would really recommend it as it brings history to life, it doesn't have complicated displays and has a fantastic "kids" quiz (although as an adult its still fun to do) through out the museum. There is also a playground for the kids with a play village while you can sit looking out at them while having a gorgeous English cream tea.

After the museum we headed to Eastbourne to watch Speedway. We had a great time there although it was abandoned halfway through because it decided to thunder and lighting! I always enjoyed going speedway but this is the first time of going while sick so I had completely different needs to when I've been before. As the temperature dropped I had to be inside as my body was crying out in pain because of it only problem being is it is upstairs and there is no lift the "wheelchair access" was a section outside so everyone had to carry me up the stairs.

On the saturday we travelled down to Folkestone to the Battle of Britain museum. I couldn't take any picture there as they have had thefts and attempted thefts, we also couldn't take in our mobile phones which made me really uneasy as it made us more open to vehicle theft. All the staff where really friendly and everything is on the ground floor so wheelchair access isn't an issue, the only problem is some of the display cases where to high so I couldn't see into them or if I could it was only partially. I would suggest taking older kids or those who are interested in the RAF or the Battle of Britain as its quite easy for children to get bored.

After the museum we had lunch at a lovely place built on the airfield, then went on to the memorial. The memorial was fantastic and the views were amazing! I loved every part of it and the kids had fun running around also finding their last names on the memorial wall. It was great seeing the pilot statue sitting looking out to see especially coming from the museum and seeing the sacrifice they made. It was also great to see the views of the white cliffs that they fought so hard to protect.

http://www.yesterdaysworld.co.uk/battle/

http://www.eastbourneeagles.co/

http://www.kbobm.org/

http://www.battleofbritainmemorial.org/the-memorial/

Job centre and getting me back to work

Hey everyone,

On the 3rd of May I'm to travel to the Job centre to discuss me going back to work. I was talking to my husband about it and I was trying to work out how I can get around my medical condition and work a full days work to support a family.

My day consists of going to sleep around 3am although sometimes its later or I don't sleep at all. I have got so used to casino programs or shopping channels, I've even laid in bed guessing which number is going to win on roulette. I have found that BBC news is the must interesting programs at that time of night. You have Hardtalk, interviews, American news and Click, I have found them actually quite interesting. Sometimes when the pain is really bad I have to resort to taking Amitriptyline.

I tend to sleep through the morning waking up around 1pm. There have been plenty of times my husband has tried to wake me up but I can't even open my eyes they roll into the back of my head and I just lay back down, when I finally wake up I have no recollection of my husband trying to wake me up. I doubt I'll be able to wake up at 7am, get myself ready and travel to work especially if I've had to take Amitriptyline as it knocks me out for over 12 hours. I can't even wake up and help my husband get my son to school.

When I am awake it takes me around an hour or two to actually be coherent to whats going on around me. I tend to just stare out into space and not understand or able to take in any information or hold a conversation. As soon as the words are spoken to me my brain has forgotten them. I doubt that I would be a very productive employee. During this period I take the time to let my body "warm up" a bit then my husband helps me out of bed and to the toilet. Sometimes I have to wait as my husband might be feeding or doing something with our son so its when he is free. From the toilet I'm taken to the sofa where I will take my medication (which at the moment isn't working at all and I'm waiting for my appointment at the pain clinic for an alternative) and have a cup of tea. 

I will spend the day either laying on the sofa trying to cope with the pain while my husband feeds, waters and takes me the toilet or I'll be able to do a little moving around. When I can move I'll do small amounts of housework and spend time with my kids. Then I go to bed to start it all over again. This happens day in, day out the only times things change is when I have things to do or appointments. This means that I have to make the ordeal of climbing down the two flights of stairs to usually the cab to take me anywhere I need to be.

How can I work? Its not because I don't want to as I loved being a Dental nurse and would love one day to go back to it but there is no way I'd be able to keep up with now. If you can find me a job that can exist around all my medical problems and appointments as well as paying enough to support my family and disability I will work. When you have an invisible illness you have no dignity anyway without this government and media dragging us down into lower depths.

Just think for a minute what it would be like to be 23 and to have your independence stripped away from you where your partner then becomes your parent. Where you can't even go to the toilet by yourself and you live in constant pain, then you have to go to the Job centre to defend why your not working and prove why your worthwhile for the tax payer to pay for rather then letting you rot.   

Happy Easter

Hey everyone,

I've had a really good Easter day but man its been exhausting. It started with getting up around 10:30am despite going to sleep around 3:00am to watch the boys run around finding their Easter eggs. We then went to my mothers house who had arranged a egg hunt for her grandchildren.

I was hurting badly before I got to my mum's as I haven't been great for the last couple of weeks. I've had real trouble sleeping and my pain levels have been really high, on top of all this taking Amitriptyline has caused me to be more tired when I'm awake and I've had very vivid dreams where I can't distinguish which is reality and which is dreamland. Some of these dreams have been nightmares and I've not been able to wake up and know there not real or have woken up but instantly dragged back into sleep by the drug to continue the dream. At times its been a truly terrifying experience.

While I was at my mum's I tried to help as much as possible but as I did the pain in my legs kept increasing and my feet swelled up. It came to a head when I reached over to get a baby bottle for my little sister who had my nephew and ended up spilling my drink everywhere. It ended up causing a right stink and I felt so guilty. I hate it when my body fails on me, I don't want to have to sit there and call someone else when I'm there. 

My husband and sister carried me upstairs and helped me change into clothes of my mothers while my mum washed mine, there was also the clean up to be done. It caused arguments from the frustration of having to clean a spilt drink and the clean up of myself. I was scolded for not asking someone else and not resting, I felt like a child being told off. I felt so childish and stupid, I'm turning 24 next week and I can't even have a drink without spilling it! I am like a child and its frustrating for me let alone the people around me. I felt like crying because I was deeply sorry for it and because I felt so useless and a nuisance to everyone. Through my inability I had caused arguments and frustration. 

I came back down the stairs to things being cleared up and a chair in front of the paddling pool so I could put my feet in. By now my my feet had swelled so much they looked like big puff balls. I put my feet in the water and it felt really good, my feet had felt like they were on fire and every step was like stepping on hot coals. As I sat there with my feet in the water I noticed that they were still swollen but my toes were blue and the rest of my foot looked like it had a rash. It looked as if every blood vessel had risen to the surface of my foot. As I sat there eventually my foot began turning back to its normal size but was turning blue so I toke them out.

The rest of the day and evening I toke things easy and mainly had people do things for me. My feet still are pretty swollen and hurt like hell and so do my thighs, it certainly didn't help with the undignified crawl up two flights of stairs to get home! I probably won't sleep tonight from the amount of pain I'm in but like always I'll survive while everyone sleeps, praying that eventually sleep will take me. 

I had a brilliant day with my family and my mum and step-dad (and also my little sister) did an amazing job with the egg hunt and the BBQ. The effort made was amazing and despite the pain (and the spilling of the drink) I had a wonderful time but I can't help on days like this, wishing that I was "normal".

So although the mishaps I wanted to say a huge thank you to my mum and step-dad for such a lovely and wonderful Easter.

Sorry I've been away!

Hey everyone,

Sorry haven't blogged for awhile, my dongle broke and I've been waiting for my broadband to be fitted. I've also not been feeling very well, I've been really drained by this disease and have had very little energy. I haven't really had the energy to lift my head of the pillow let alone write a blog post! Its been quite a frustrating time as I go from fatigue to insomnia but either way I'm constantly tired.

So really what I wanted to say was forgive me for not blogging more often and I promise a blog post will be coming your way soon! xxx

Weight and Intracranial Hypertension The BIG Debate

Hey everyone,

I just want to say before we start that I'm sorry I haven't written that much as I've been feeling really under the weather.

Recently I've joined support groups on Facebook for Intracranial Hypertension and I've noticed that most of the women who are diagnosed with IH have been told its due to their weight. I haven't personally had this said to me as in my case (and I don't want to offend) I wasn't overweight when I became ill, I became overweight by being ill. 

I know that a lot of neurologist believe IH is due to being overweight although there is no definitive cause. Due to the fact there isn't a lot of research done on causes or affective treatment for IH no-one really knows. Although there is no deviate cause many women find themselves fighting a losing battle trying to convince their neurologist its nothing to do with weight.

I know a few women who have been told that if they lose weight they will GET better, false. Losing weight will not cure you of IH as, as it stands there is no cure for IH. A few women have been told that if they lose weight they will FEEL better, again this is false. Because IH is an unpredictable disease there is no way of determine whether or not someone will feel "better" by losing weight.

If a women with IH wants to lose weight it should be for their own self esteem not because a neurologist or doctor tells them to, to "make them better". I know it makes the women who go through it as well as myself angry that their having to defend themselves. A women I know had an interview with ITV about IH titled "lose 2 stone to save your eye sight". The lady wanted to make it clear that rather then getting better and saving her eye sight losing 2 stone in 2 weeks did nothing but make the situation worse and yet all ITV really centred on was the fact its "caused" by being overweight.

In the medical system its hard to fight against doctors and consultants who don't listen to you without this notion that its all caused down to weight or will be made better by losing weight. Although I agree weight is a common factor as well as being of child bearing age the relation between these things and IH are not known and there are a lot of over factors that can cause it and people who aren't overweight or of child bearing age are not ruled out. Also many women suffer for years with IH before getting treatment which can contribute to them gaining weight plus there are other disease which seem to go hand in hand with IH like under active thyroid and fibromyalgia.

In my view to much is still unknown about IH that it can't be fully determined what if any weight plays in the whole cause of IH and if weight is an issue for you, think more on losing weight for your own well being then on hoping its going to "cure" you.

Talking about weight and IH a few women have got together to lose lbs for pounds in a bid to raise awareness and funding for IHUK. Please check them out and donate as much as possible! Thank you.

http://www.iihuk-pounds4lbschallenge.moonfruit.com/#

Also for any information about IH you can find here:

http://www.ihrfoundation.org/

March for the alternative - March 26th 2011

Hey everyone,

On the 26th March 2011 500,000 (number depends on what paper you read) people descended on London to fight the cuts. Unfortunately I couldn't be there as I was too ill but I want to thank all those who toke a stand and marched through London. Although later in the day a few peaceful protests ended up in riots with the police because of their reaction and UK-Uncut was vilified by the media as hooligans I was very proud of everyone who toke a stand and who didn't just stand around moaning.

Though the government have turned round and said that they are listening but are going to do nothing about I really feel the power is with the people. If everyone in this country agree (which will be minus the rich and the bankers) stood out side parliament they would have no choice but to listen. The police can only take power when the groups are small but if we can all take courage from those people who marched and stand up to them they can't arrest or beat everyone.

So to everyone who marched take pride and courage for what you did and to the rest of the country its time to unite and safe this beautiful country of us from ALL the major parties! Its time for something new!

The higher you build your barriers, the taller I become.

Why research needs to be done on Intracranial Hypertension- Elena Manganvaga's story

Hey everyone,

I have recently had a neuropyscarist appointment in which he tried to say that I had "made it all up" because I was still suffering from Intracranial Hypertension. Just because you have a lumbar puncture there is no reason that you are going to be "cured" and it will never come back. Not only myself but a lot of people have chronic IH and the fact that he thinks that I would "make up" (which I couldn't understand why I would!) the fact I had chronic IH just shows how much doctors really know about IH. 1 in 100,000 people get IH and there is very little known about it and the symptoms it causes, treatments or cures. America is ahead of the UK with their research but even their knowledge is limited.

While on Twitter complaining about the treatment I'd received a young girl got into contact with me and told me how the same hospital treated her, this is her story.

Elena Manganvaga's story

I was diagnosed in April 2008, although I only got a dignosis then I have been suffering from headaches on and off since a very young age. I was only diagnosed because I failed a visual fields test at my opticians, she checked the back of my eyes and said she thought they were swollen, gave me a letter to give to my GP who then referred me on to Kingston Hospital Eye Clinic.
I underwent tests there and they said my optic discs were severely swollen and thought it was IIH, then proceeded to tell me that it was mainly because I was fat. (The consultant actually called me fat) I was then referred under the care of a neurologist named Doctor. Al-memar; he reaffirmed the consultants findings and sent me for my first LP in July 2008, the opening pressure was 27, as they were draining the fluid off there were concerns because the pressure kept going up even as it was being drained.
After this I continued to have LP's as well as being on Diamox on/off. Whilst under Dr. Al-memar's care I only ever had visual field tests as I was complaining of loss of vision and periods of blurred vision. I continued having treatment with Dr. Al-memar up until the end of last year. The reason I transferred is in May last year I completely lost the vision in my left eye, my parents rushed me to Moorfields A&E department where I was put on an emergency dose of Diamox and they referred me to their St.Thomas' department under the care of Doctor Gordon Plant (whom is my consultant now). I stayed in Thomas' for a week under-going tests where I had my last LP which was a normal pressure. They discharged me back to Dr. Al-memar leaving me with only a small portion of central vision saying 'we think your eye-sight could come back' when I had my last appointment with Dr. Al-memar he told me he couldn't understand why I was getting headaches I was in 'remission' and he should discharge.
I lost my temper and told him to refer me to Dr. Plant and he did. So now I'm under-going more tests at the moment to see what the problem with my eye is, and now apparently suffer from migraines, which I don't believe for a second. I am sick and tired of doctors telling me that it can't be IIH or the same headache as before, but it is. They have let me down, they've left me with only a small portion of central vision, I can't define shapes in that eye I can only see bright colours, and large movements. They have no explanation for my loss of vision as they can see no damage to my optic nerve. I cannot remember my life before the headache, nausea and passing out. I'm 19 and I can't do half the things my friends do and no-one can tell me what's wrong. I put my life on hold for a year. I dropped out of college and had long periods of time off of work and I'm no closer to getting any answers. I've been in contact with other IIH patients and everyone has different symptoms but none of us are getting answers. I know about octreotide but I haven't approached the subject with my consultant yet.
Don't give up hope, I did for a very long time, I felt lonely and depressed because I felt like the doctors had let me down, if they had monitored my eyesight closely over the two years my vision problems could have been avoided, nor did they offer me any support at all with how to cope. I only started to find hope again 6 months ago when I found Charlotte and other IIH sufferers. Don't let them tell you your 'making your symptoms up' each case of IIH is different, I spoke to a man who only had headaches no swelling in his optic discs or no damage to his eyes. I spoke to another woman who had swelling in the optic discs and no headache, and I get both. Each case is different they can't just dismiss it because if could eventually leave you blind completely. I refuse to give up and settle with their excuses, someone somewhere has to help IIH sufferers. It's not just a headache it is so much more...

Someone who has IIH doesn't choose to have it, its thrust upon them and its unfair and unrealistic for doctors to expect us to put up with losing our eyesight because they aren't aware or up to date with IIH. They should see us as a case study and way of learning rather then rejecting us. This young girl and many people like her suffer due to lack of research and training, our governments and medical team need to take responsibility and start helping people like us.

Disabled people don't want to be left out in the cold!

Hey everyone,

This wonderful artistic and powerful image comes courtesy of  Kaliya Franklin who is a disabled campaigner and is a founder and director of The broken of Britain.

On the eve of the second reading of the government's controversial welfare reform bill on the 9th March Kaliya Franklin braced the cold to make this stark and very real image to convey how vulnerable and exposed sick and disabled people will be by some of the bills proposed by the government across the UK.

The image portrays just as Kaliya Franklin's wheelchair is out of reach many services, social care and support will be left out of reach for many sick and disabled people in need if these reforms go ahead. Many will be "left out in the cold"

The left out in the cold campaign is the work of The Broken of Britain, they have decided to use this stark and thought provoking image to show the reality many sick and disabled people face. Sick and disabled people don't have a voice in society apart from the tireless work of the people at The Broken of Britain and other campaigners and they are hoping that the image provokes not only the government but the able-bodied public into acting.

Merton is already feeling the affects of the cuts and many services have been taken away from the vulnerable in the borough. Me, myself and my sister have felt the full force of Merton's adult social services being stretched and not having enough money for vital adaptations and services.

Just like me sickness and disability could be just around the corner so although it may not affect you now please don't leave the most vulnerable people in society "in the cold!"

If you would like to be involved and help please share this image everywhere you can. You can share this post or the Broken of Britain post through the Facebook and Twitter buttons, you can also send if to your MP if you can.
 http://thebrokenofbritain.blogspot.com/2011/03/left-out-in-cold-press-release.html

G-spot and pain relief?

Hey everyone,

I recently saw on t.v that the G-spot is the bodies natural pain reliever, don't get me wrong sex is great but unless someone has a constant finger on my G-spot then its short lived. When your in the "moment" sex is a great way of taking your mind of the pain and focusing on something else but as soon as that buzz is over the pain comes back and 9 times out of 10 its worse because of the activity of sex.

I'm a firm believer that even with a chronic illness you have to keep up the intimacy of your relationship or you and your partner will never survive. We all know that most partners stray because of the neglect they feel and not feeling inportant or loved by their partners anymore, so sex is very inportant but the idea that its a pain relief? I'll stick to my pain killers thanks, they last for four hours not four minutes.

I think its more of mind over matter when your having sex, you focus more on the intimacy and the pleasure then the pain you feel. So enjoy the mixture of both the pleasure of sex and the pain killers! Its a win, win situation.

Scared of the dark?

Hey everyone,

I know its a funny think for a grown women to say but I'm scared of the night. Let me explain, living with a invisible chronic illness you don't know how your going to feel from day to day so when it comes to night time and its time to go to bed I get scared of falling asleep because I don't know how I'm going to feel when I wake up. 

It terrifies me as I don't know if I'm going to be in extreme pain, how late I'm going to wake up or if the fatigue is going to be really bad and all I do is slop on the sofa or if its going to be a day of being bed bound. Sometimes I've laid in my bed and cried at the thought of going to sleep and waking up in an unpredictable world but I have no choice because whether or not I go to bed its still going to happen.

Whether I like it or not relapses are still going to happen, the pain and the mobility problems are still going to be there and a 23 year old is still going to have the body of a 80 year old. In fact an 80 year old probably has more of a life then me! No matter how I feel its as sure as dusk and dawn so I've just got to get on with it no matter how I feel inside, I have no choice. 

So to night as you snuggle down to bed, thank god that your life is not taken out of your control and your not trapped in your own body, thank him for the fact that you can sleep soundly knowing something horrible isn't waiting for you in the morning or might come sooner.

Living with a chronic illness, running our own race, following our own path.

I hate relapses!

Hey everyone,

I have had to face the fact I'm going through another relapse. Having two months of pain killers actually doing their job, having more mobility and not feeling so weak all the time, but the best change would have to be the fatigue subsiding for awhile. While I'm in the "good" stage I tend to sleep a normal 8-10 hours a night and don't feel tired during the day but when I'm in a "relapse" I can sleep for other 12 hours, feel really tired and lethargic during the day and take a nap for 2 hours before going back to bed around 11pm.

When I'm in a "relapse" I am in a extreme amount of pain, I lay on my bed (usually naked) with a fan on (no matter what the time of the year is) crying my eyes out because the pain is to much. I have burning pain in a lot of places on my body and it feels like i have literally been set on fire and having any kind of material on my body causes me pain so I spend a lot of the time naked or in pajamas. Also because of the burning pain I find it really difficult to move as any little movement causes me pain and walking is unbearable. Along with the burning pain I have this cramp like aching pain as well as joint pain so what ever I do something is going to hurt. I also have a lot of weakness so have to be helped with drinking and sometimes eating, if I have a cup of tea I have to wait for it to go lukewarm before I can drink so I don't burn myself if I drop it all over myself.

During a "relapse" I lose my life. I end up bed bound and shut away from my family (as my youngest will come in and will pull things down, grabbed things he shouldn't and climb all over me so my husband shuts the door!), People end up getting fed up with me as I constantly let them down by not going out to things. I lose my life for 3-4 months, I do nothing, I see nothing, I am nothing for the whole " relapse" time.

I want to cry when I can see the signs and symptoms of a relapse as I know for 3-4 months I won't exist and have no life until I come out the other side. The only thing that keeps me going is the communication on Twitter with my #spoonie friends as the virtual me still exists, is still there and can still make a small impact on the world, so despite the pain I will push through it just to write a 140 word status so I can feel that a small part of me is still part of this world. 

Thank you for reading xxx

Confused.com

Hey everyone,

I have suffered with chilblains for around six years now just after my first son was born but I have noticed that in this last year, since I've been ill they have got a whole lot worse. The chilblains are on every single finger and I can't understand why as chilblains only come when exposed to cold then warmed up quickly but due to mobility problems I haven't been able to go out so why the chilblains?

I may have a little clue as my hands and feet go freezing cold and turn blue like I'm dead so that might account for the cold, and then when the blood comes back it could be the warm up? I'm not to sure whats happening and when I went to the doctor he said he couldn't give me and medication to help because of the Intracranial Hypertension. The medication could cause me to have swelling as the medication keeps the blood vessels open.

So if any spoonie has an idea of what might be causing it I'll be grateful for any advice!

Thanks for reading xx

Being a #Spoonie

Hey everyone,

Sometimes I feel like the only people who understand me, understand my limitation and pain and who I can speak openly about symptoms even the embarrassing ones are other spoonies. I have been speaking to more and more people with chronic invisible illnesses through useing the hash #spoonie on Twitter, but when I speak to or are with people who don't have these problems I have trouble communicating and getting them to understand how I feel. Most people sort of ignore my limitations and are solely focused on what they want or need.

They don't seem to understand the fact that you haven't slept for three nights, in extreme amount of pain, low mobility and the fact that you had intense diarrhoea all day with stomach pains. Nope all their focused on is the fact that in their view you have made up and excuse of "illness" to not come to their party or missed lunch with them or haven't made the exhausting trip of going round their house. How selfish of you!

The only place you seem to have peace is when your talking to people who truly understand how you feel. The great thing is that they don't say your moaning and that someone is "worse then you are" they understand and give you support. I feel that some people in my life have tunnel vision and only think of themselves so that makes me more hardheaded and stubborn so I will survive with the help of my husband and we will say that we did it without there help!

So in conclusion I love being a #spoonie! I have people I have never met being more sportive them some people in my life. So I support and are thankful to all my #spoonie warriors who together we can fight against anything that is thrown at us!

Living with a chronic illness, running our own race, following our own path!

Love and support

Hey everyone,

When your whole world is turned upside down you begin to see the world and the people in it in a very different light. The strength and ability of human beings when their pushed to a limit always surprises me. My husband is a fantastic man and over the last year hasn't ceased to amaze me, he works so hard each day to look after us all.

In the last year my husband has loved and supported me through everything. He says to me "I vowed through sickness and in health" when I mention how much he does for me. Just as my life has changed dramatically so has my family's, my husband has become the main carer for all of us. He comforts me when I'm in pain during the night and still manages to get up with our baby and take our son to school in the morning leaving me to sleep. He takes care of them all day, does all the housework and makes sure we have our basic needs. He supports me through every test and appointment, makes phone calls to doctors and chases results. He has been my support through this last year and kept me sane, without him and my boys I don't think I would have the strength to carry on. In my worst moments he has been there by my side. Most of my family also have helped in the little ways they can.

There is also a wealth of support and love on the Internet and social networking sites. I met who I class as a good friend of mine through a support page on Facebook and a lot of faithful friends through Twitter. I have been on Twitter for a while but never really knew how to use it to my advantage until I followed the broken of Britain. From following broken of Britain which is a non-party political campaign for the rights of physical and mental disabled people and their carers, I was fortunate enough to read the "spoon theory" by Christine Miserandino (bydls if looking for her on twitter) which helped me understand and accept my disability as well as explain it to others. Through Christine Miserandino's work #spoonie has become a trending topic for all disabled people suffering any type of disease or disorder to confide in and support each other as well as sharing advice on disorders, medication and equipment that might help.

Through Twitter a lot of disabled people in the UK have found a voice to fight the cuts and to share information on it also sharing in the shock, disappointment and the feeling of being let down by their government.

What I'm trying to say is that no matter how lonely and desperate you might feel there is always love and support around you, you just have to tap into it, mine is through social networking sites whats yours?

Thanks for reading xx

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino

http://thebrokenofbritain.blogspot.com/

Idiopathic Intracranial Hypertension (IIH)

Hey everyone,

I want to talk about Intracranial Hypertension. Intracranial Hypertension isn't widely known among the spoonies of the world, let alone the non-spoonies but its something that can affect anyone, at anytime, at any age. Idiopathic Intracranial Hypertension (Idiopathic means of "unknown cause") is a serious neurological condition in which high cerebrospinal fluid (CSF) pressure within the skull that causes unbearable headaches, swelling of the optic nerves and can result in loss of vision or blindness. Diagnosis of IIH is made by ruling out other neurological conditions that might have the same symptoms. Neurological examination is normal (apart from my case because of the underlying neurological problem) apart from the presence of swollen optic nerves although it may not always be present. Definitive diagnosis of IIH is made by performing a lumbar puncture which shows the pressure of cerebrospinal fluid (CSF) to be above 25cm/H₂O.

 No-one knows what causes IIH, although blood clots in the veins draining the brain can cause Intracranial pressure. Withdrawal of steroids, large doses of vitamin A or intake of foods containing large amounts of vitamin A, use of body building type steroids and possibly, hormonal changes and certain drugs can also cause raised intracranial pressure. Caffeine and stress have been said to play apart in Intracranial hypertension. The most common symptoms of IIH are: severe headache, papilloedema (swollen optic nerves), temporary loss of vision, transient visual obscurations (blurred vision), double vision and decreased visual acuity, pulsatile tinnitus ("whooshing noise" in the ears in time with the pulse), and pain behind the eye and with eye movement. Other symptoms reported by people with IIH include: nausea, vomiting, fatigue, photophobia (dislike of the pain caused by bright light), problems with balance and spatial awareness, aphasia (difficulty using or understanding words), disorientation, loss of short-term memory (sometimes long-term memory loss), confusion, feeling "spaced out" and lack of depth perception (e.g judging depth of stairs, steps, curbs). Also people with IIH may find unfamiliar (and even familiar) places, traffic, confusing and overwhelming. 

Treatment of IIH is the most commonly prescribed medication acetazolomide, which is a diuretic. It's thought that it acts by reducing the production of CSF. It's relatively safe but nearly all patients have tingling of the fingers and toes as a side effect of the medication, and patients are advised to increase their intake of potassium as acetazolomide drains the body's stores of potassium. As well as the standard acetazolomide, a sustained release form of the drug is also available, 'Diamox SR', and many patients tolerate this form of the medication better and find that the side-effects are reduced in comparison with the standard form of acetazolomide. Another diuretic commonly used is frusemide. Sometimes a short course of steroids may be given. Various analgesic drugs (painkillers) are used to treat the pain associated with IIH, with varying degrees of success, but as with all painkillers care must be taken as many drugs can be addictive and some can have severe side-effects. Some people need repeated regular lumbar punctures (LPs) to remove excess CSF, or if symptoms don't improve on medication, surgical treatments may be considered. 

My experience of IIH  have been that I had really intense headaches which made me puke, sleep all the time, have no idea where i was or what time it was and because of the sickness I couldn't take my pain killers so I was in extreme amount of pain. I spent days in my bed watching kids t.v (although my kids weren't in the room with me) to this day I have no idea what I watched. I began having vision problems in the sense of double and blurred vision, my eye began to become really painful and felt swollen (although you couldn't see the swelling), my head hurt like I had hit my head of the wall or the floor, I couldn't even lay my head on the pillow.

I ended up in A&E so many times begging doctors to help me with the pain and my eye, they all turned me away and told me to go to my GP. What they should have done is checked my eye seen that there was swelling in my optic nerves, asked about my other symptoms and sent me for an emergency lumbar puncture. Instead I had to wait six months of my symptoms getting worse to have a lumbar puncture (which was ordered to rule out other neurological problems). The lumbar puncture showed that I had high CSF pressure yet I didn't recieve acetazolomide till the 7/02/11.

Acetazolomide has been prescribed to me to reduce swelling in my eye and to reduce the pressure in my brain and spine. In this last week I have been taking them I have felt awful! I have felt sick and because of the sickness a loss of appetite, I have had a headache, a burning pins and needles feeling in my hands and feet, everything tastes disgusting, drowsy and a constant thirst and need to urinate, put all these side affects with the other symptoms I have, it hasn't been a very good week!

I feel like I'm in a catch 22 as I have to take these tablets and up them to 500mg twice a day to save my eye sight. If these tablets don't work or I feel I really can't cope with them then I will have no choice but to have surgery to save me going permanently blind. This makes me really angry as if the doctors had caught and treated me early on I wouldn't be in this position. My mum has Intracranial hypertension as well and goes to a different hospital to me, as soon as she has any experiences of the symptoms she is sent straight away to A&E where she is taken seriously, given a emergency lumbar puncture and kept in over night to make sure she is OK and prescribed medication. She only has to take the medication for a month to make sure the swelling goes down and is OK to carry on until the next flare up. In the differences of a matter of a couple of miles we are in two different positions.

I implore you all that if you experience regular headaches and eye problems go to your doctor or your local A&E. If your a caffeine lover this is a serious and rare disease and I might lose my eye sight and one of the main causes of IIH is caffeine and stress! Beware of your health as you never know when YOU might be affected.

I want to give up!

Hey everyone,

I know some people are going to be mad at me saying this but I want to give up! I'm tired of needing help and not getting any, tired of fighting for the simplest things, I'm tired of all the phone calls having to chase down doctors, secretaries, receptionists, occupational therapists but most of all I'm tired of the pain.

I'm in constant pain and I'm fed up of it, I want to feel "right" for one day. I don't want to be in pain or have all the other symptoms and I don't want to fight for help that I'm not receiving. I just want to give up on it all because I don't see the sense in fighting.

The doctors don't care what I'm going through as long as they don't have to deal with me for more the for 5/10 minutes every four months their fine to just leave me. A&E doctors don't care how much pain I'm in because as long as its not going to kill me they don't have to deal with me. Occupational therapy and my council don't care that I'm living in a second floor flat with no lift and don't get out much or the fact I can't get my wheelchair round the flat which would help my husband because he wouldn't have to carry me or the fact I'm nearly breaking my sink from having to lean on it to get on and off the toilet. I'm probably going to be kicked off of DLA for not being too "disabled" enough for them as I don't have a diagnosis and that's without the emotional stress I'm putting on my family.

So please someone tell me the point of still fighting?

Can anybody help?

Hey everyone,

I don't really know how to explain how I feel or how or what to talk to you about because being in limbo is a hard thing to describe or to convey how you feel. All I can say is I need help and I mean real help. I have been told recently from my lumbar puncture results that I "properly" don't have MS (multiple sclerosis). To explain my lumbar puncture shows that everything is normal in my spinal fluid (apart from the intracranial hypertension) but there is always a slim chance that it could be, they can't rule it out 100%. Also a friend of my mother-in-laws who has MS wasn't diagnosed with it until her second lumbar puncture.

This has left me uncertain to whether or not I have MS. If there is a chance, how ever slim could I be that percentage? 20% of asthmatics have allergic reactions to Diclofenac, I'm in that 20% and my asthma isn't that bad so why couldn't I be in that 10% in which the lumbar puncture doesn't show certain anti-bodies?

The other thing that is driving me crazy is that I have a lot of symptoms of Lupus. Lupus is called the "great impersonator" so my neurological symptoms that I think are MS could be Lupus. The reason I have thought about Lupus is the fact I have recently developed a rash on my face. My rash goes from one cheek to the other across the nose, it isn't scaly or pimply, it actually looks like I've been sun burnt. I have never had any facial rash or redness on my face until recently, my doctor has dismissed it as a fungal rash even though my rash isn't scaly or that I don't have a scalp problem. He dismissed it also because my ANA test (Antinuclear Antibody) came back negative.



seborrheic dermatitis



My face rash

 I'm in limbo with Lupus because there is a 5% chance of having SLE (Systemic lupus erythematosus) and having a negative ANA test. Can I be in that 5%? The other reason I'm in limbo is that my grandad and cousin have and had a form of Lupus.

I need an answer. My doctor doesn't know much about what I'm going through and the neurologist appointments are only 5/10 minutes long and they want you out as soon as possible. They don't want to answer questions or know what your going though, no-one has asked my family history or really listened to my symptoms.

I'm going to list my symptoms and if you can help me please do as I'm in limbo and its driving me crazy. I feel really isolated and want to give up, please help!

Pain
Burning- face, chest, arms, elbows, hands, fingers, groin, legs, knees, feet.
Aching/cramps- arms, elbows, hands, fingers, legs, knees, feet, toes.
Joint pain- elbows, wrists, fingers, hips, knees, ankles, toes.

Numbness- arms, hands, fingers, legs, feet, toes.

Low mobility- hard to walk like a weight on my legs that gets heavier with every step, knees give way, my feet dragging along the floor, legs giving away which makes me fall over and it can come at any time.

Vertigo- a feeling of walking on a steep hill which makes me dizzy and fall over.

Vision- blurred vision, double vision.

Facial rash- red rash that goes from one cheek to the other across my nose, is NOT scaly or pimply.

Fatigue- tiredness all the time at its worse i could sleep for over a 12 hours with a 2 hour nap afterwards, through fatigue my face has hit my dinner plate!

Bladder problems- needing the toilet quickly and nearly wetting myself if I didn't get to the toilet quickly, getting to the toilet and not having a lot of water coming out.

Bowel problems- constipation, diarrhea, needing to go really quickly, flatulence, trapped wind.

Memory problems- easy forgetful sometimes within minutes of being told something had a really good memory before symptoms started, hard to concentrate.

Spasms and restless legs- my muscles spasm and my legs have an uncontrollable urge to move can keep me awake for nights on end.

Heartburn and indigestion- they both can come out of no where without me eating or drinking.

Itching- I itch all over all the time.

Easy bruised- e.g a blood pressure test can leave bruises on my arm

Pain in chest- which can cause shortness of breath and a rapid heartbeat, feels better when sitting up.

Irregular heartbeat- my heart seems to skip a beat then pounds really hard for the next four beats which makes me short of breath and pain in my chest, palpitations.

Dry mouth- constantly feeling thirsty and my mouth being dry.

Smell heat- when my face is burning i can smell heat which is accompanied by my top lip burning.

Chilblains on every finger without going out into the cold and warming up quickly

Also the symptoms of Intracranial hypertension.

Please help!

One year anniversary the lessons I've learned- Isolation

Hey everyone,

The song from Chicago "Mr. Cellophane" really rings true for me this last year. When your in a wheelchair people pushing you don't really understand how isolated and lonely it can be. I have found that I will be looking at something or talking to someone and because the person pushing me needs to leave or they want to do something I'm hijacked and taken away to what ever I was doing. My views, my opinions and my will goes out of the window as soon as I go into the wheelchair. I have had an experience were my sister toke me shopping because she is so used to looking after children that she dumped me next to the aisle and told not to move, when I tried to wheel myself to get something she came back and said "I told you not to move!" grabbed the handles and wheeled me away from what I was trying to get. My husband has listen to me and taken on board what I've said as its easier from me to get mad at him and tell him how I feel then other people. I'm still me, I still have a voice and a mind of my own but I feel more and more that its "easier" just to sit back and not argue, no-one understands how I feel and what I'm saying. I hear more and more "I Would love for someone to push me around all day" but when their independence is taken away not just physically but their wants too they wouldn't appreciate it as much. Its easy when you can walk, when someone wants to go one way and you the other to says you go your way and I'll go mine and just do it but in a wheelchair its not that easy and more often then not the will of the person in the chair is over thrown.

Another cause of isolation is when you stuck in your home day after day and are not able to go out and experience life. Those in charge of housing don't care that your stuck indoors everyday because your in a flat on the second floor with no lift and you can't make the stairs, they go home each night to their families and leave their worries at work, the name and number on the paperwork. People who know you and family always have sympathy in the beginning but that wains after awhile as their life continues so you spend days in your home with not a lot socialisation.

Being in chronic pain most days can cause isolation as most people don't understand what your going through and your abilities. Pain can make you irritable to so being around people is difficult. I feel isolated most days, I feel left out of family as I can't just go and visit people and because they would need to come to me its easier not to. Friends parties, going to social advents or even just going to the pub is out of reach to me.

I have learnt to just deal with my isolation and argue to much, if people don't want to understand I can't make them. Life goes on for everybody else and the focus on their own life's come first, that's normal! Even now I'm focusing on my own life and my own troubles.

I'm hoping a part of my isolation is resolved soon by moving to a different home where I would have the ability to go out more, I hope that those at Merton Priory Homes know how much isolation I'm going through and need help soon.

Please help me soon.

Thank you for reading xx