One womens story against an a invisable illness

One womens story against an a invisable illness

Monday, 4 July 2011

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

Wednesday, 25 May 2011

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.

Friday, 20 May 2011

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.

Thursday, 19 May 2011


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!

Wednesday, 18 May 2011

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...

Thursday, 12 May 2011

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?

Sunday, 1 May 2011

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.