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