Education is key.

A lot of you will have noticed the past week or so, I have mentioned a petition which I have been asking you all to sign. This is because I am sending a letter to my local MP to try to raise awareness for those suffering with chronic illnesses. I am not the best writer but if what I've wrote can educate just a couple people, it makes all the difference. 

You can sign the petition and join the fight by clicking here.

"Dear Mr Campbell,

My name is Kirsty Gilboy and I am 20 years old, not that it matters much because this plea for help is about so much more than just me. Although, I do think it would help for you to have some background information in order to understand my passion,

At the age of 17, I was diagnosed with rather aggressive, sero-negative poly arthritis. To put it simply, my own immune system began to attack my joints leaving them swollen and excruciating. As someone who balanced college and work, this devastated me. I basically had to put my life and dreams on hold. My days involved lying in bed and on a good day, I could make it to the settee with assistance. My whole being was consumed by pain, fevers, exhaustion and nausea. 

Arthritis, along with other autoimmune diseases, is a chronic illness. The term 'chronic illness' is defined as a long lasting condition that can be controlled but not cured. Many autoimmune illnesses also fall under the term 'invisible illness' which is an illness which is not immediately apparent. Most symptoms go unknown to the uneducated. 

I saw a rhuematologist who put me on a drug called Methotrexate which is a chemotherapy type drug commonly used in the treatment of autoimmune illnesses. It works by suppressing the immune system so it cannot attack the body. However, suppressing the immune system causes the body to become more susceptible to viruses, infections and so on. It also involves careful and regular monitoring e.g. blood tests. 

As I struggled to walk, my family had to accompany me to appointments as well as take time off work to look after me. I felt like such a burden on my family, so this along with my arthritis symptoms, caused me to spiral into depression. After hitting my lowest point in January 2014, I was prescribed antidepressants. Over a year later, I am still trying to find the right medication for me. 

When I first became ill, I was told that I wasn't entitled to any help from the DWP and so as soon as I felt the slightest bit better, I returned to work. However, the job was too strenuous and I always hit a brick wall of exhaustion a couple of hours into my shift. When I quit, I rang the DWP and was advised I could claim ESA at £57 a week. 

I'm sure you can imagine how I struggled to survive on £57 a week despite living with my parents. In the past 2 years, I have tried 3/4 different jobs, all of which I've had to leave due to my health. In November 2014, I quit a job I had only been in for 3 months. I was desperately ill and so I applied for Personal Independence Payment. I was almost instantly rejected due to my 'immigration status'. I have never moved house never mind country! It took the DWP 3 months and multiple calls from myself to fix this mistake. At my assessment, I was told my symptoms didn't 'count' and was once again rejected. It has now been 8 months since I originally applied and I am now preparing myself for the hearing on August 19th. I feel I already know what the outcome will be. 

As I was on a chemo drug, I suffered many side effects. There were many days where I contemplated taking myself off them as I didn't feel the positives outweighed the negatives. I was on a lot of medication to counteract the nausea, stomach cramps and headaches. At one point, I worked out the total for one month of medication was around £65. That doesn't even cover the antibiotics that I had to take every other month because my body couldn't fight infections alone. 

Without the drugs, I could not function. However, as my condition was not classed as 'life threatening', I had to pay for my prescriptions. In January 2014, I took an overdoes of codeine as I was in agonising pain. To be in that amount of pain constantly and having to pay just to dampen it down is inhumane and unjust. 

During the election in May, I voted for the first time. I hoped so desperately for a Labour Government. The NHS is my own possibility of getting some normality back in my life. The rumours of cuts to be made by the Conservatives petrified me. I have a group of nurses and a rhuematologist who I see on a regular basis. They have been with me from the start of my fight, they know the ins and outs of my case and so they provide the best care for me. To get rid of any one of them or make them work less/more hours would most likely reduce the level of care I receive. 

Many autoimmune illnesses are underfunded by the government and so we strongly rely on charities to carry out research and the NHS to provide care. As there is no sign of a cure just yet, if the government was to take away the NHS, they would take away the hope of millions.

My current situation is not particularly great. I am still struggling with my health due to failing another medication and I am once again, unemployed. At the moment, I am existing, not living. 

I am not sure what you will think of my story. It may be something that you have never heard before but there are so many others with a journey just like mine. A journey in which they fight against their bodies, the stigma, doctors and the benefits system. It is a war where most battles are lost.

Mr Campbell, I am not asking you to change the world or feel sorry for those with chronic illnesses. I am asking you to educate others on the lives of those who fight their illnesses daily. The more people that know, the more attention that is brought to the issue. Then maybe one day, the Government will rethink prescription charges, the benefit system and funding for research. Maybe then our illnesses wont be invisible. "

Thank you for reading xo

The Unsung Heroes of Chronic Illness.

It's my belief that the unsung heroes of chronic illness are not the doctors nor the researchers but the families and friends of those affected.

I had a reality check recently when my boyfriend dislocated his shoulder. After 2 years of being cared for by him, it was time for the role reversal. Needless to say, I was in total shock and had no idea what I was doing. 

I got frustrated when I saw him say no to pain killers which I thought would help him. To see him look so fragile and helpless broke my heart. When his face contorted in pain, I felt the tears sting my eyes. This is something that I had to go through for a couple of days, but is what my family, boyfriend and friends go through on a daily basis.

To see someone you love, suffer daily is a cruel torture.

I'm not totally naive. It's not like I've taken my entire family and friends for granted for the duration of my illness so far. But I never understood just how much they do for me on a daily basis. What a lot of people don't understand is that arthritis is so much more than pain (as are most other chronic illnesses). I often forget to eat, to take tablets and go to appointments.

The help they give is so much more than making food or going to pick up prescriptions. The emotional support they give is beyond anything you can imagine. I never realised how much they held me up. I didn't realise they were the ones who made me strong. 

What I realised when my boyfriend was injured is that it wasn't the physical side of pain that hit me the most, it was the emotional aspect of it. To see the one I love cry through the pure stress and confusion caused by pain, hit me like nothing else. When we got home from the hospital and I had to help him get dressed and make cups of tea and check he was taking his tablets, it struck me - I now have to be strong for him. 

It has now been 10 days since he dislocated his shoulder and I find myself still checking up on him. I'm so exhausted. To care for someone else as well as yourself is so exhausting. To think this is how my family feels on a daily basis hurts me. My chronic illness affects so much more than just me. When I am having a bad pain day, it radiates from me and affects those around me. 

So to my family, my friends and my boyfriend - I love you. You are the reason I am still going strong. 

How I came to pull into the slow lane.

Do you know what a chronic illness is? Do you know the definition of the term? And even more than that, do you know of the devastating effects it can have on a person's life?
I'll put it in the simplest way possible, a chronic illness is an illness which can be maintained but up until now and for the foreseeable future, it cannot be cured.

My name is Kirsty, I was born fairly healthy and the only thing I ever really suffered with, was my incredible knack at catching any cold or virus someone around me had! Oh and I suppose there was also the awful shoulder pain that I suffered with but the doctors put that down to an 'impingement'.

When I was 17, my life was tipped upside down. It was July and my older sister was moving to Florida with my nephews and brother-in-law. I'd felt ill for a few weeks - fevers and nausea, fatigue and breathlessness. I just pinned this down to the fact that I was about to sit my AS exams and of course, the impending pain of my family moving away. I went to a GP and without a second thought, he agreed.

Towards the end of July, the fevers started becoming more frequent, the fatigue got worse as the sleepless nights started to set in. And the nausea? Don't even get me started on the nausea! All of a sudden, I woke up one day with an incredibly swollen toe on my right foot.

One night, I had my friend over and we were having the typical girlie night but it was tiring me out so much that we both went to sleep. Of course, being the kind person I am, I slept in the spare room and let her take my comfortable bed. As I got into bed, I slid my feet under the duvet but something didn't feel right. It felt the skin on my toe was on fire and the touch of the sheets was enough to bring me to tears. It took me a while to fall asleep but I did.

Like awaking from a bad dream, at 4am, I woke up. I realised that my face was soaked, I'd obviously been crying in my sleep. The pain in my toe was now so intense it felt like my whole foot was in agony. I lay in bed for a while, tossing, turning and crying to myself (this becomes a common occurrence in my life). Eventually, at 5am, I crawled to my parents room. I begged and begged to be taken to A&E but the both agreed, because of the time I would be waiting for ages and suggested we wait until around 8am.

I managed to get back to sleep after that. I think it was partly exhaustion! I woke up and got ready and off we went to A&E. After waiting just over an hour, the doctor told me I had soft tissue damage and that I must have knocked it without realising. I agreed with the doctor as I am often bumping into things. I was prescribed ibuprofen and to ice and elevate my foot.

I tried what I had been advised to by the doctor but it wasn't working and I was in fact, getting worse. Other toes on the same foot began to swell, the joints looked almost purple and was hot to touch. The pain, fevers, nausea and fatigue were all intensified. I made an emergency appointment with my GP who took bloods and suggested I had an infection. I was prescribed antibiotics but the next day the GP surgery rang and advised for me to go straight to A&E as something in my bloods didn't seem right but this was probably related to the infection. I was prescribed codeine by the hospital and sent on my way.

After this, my other foot started to swell, I had an overnight stay in hospital, another two trips to the GP and then one final trip to A&E. On that last trip to A&E, my Mam was at her wits end. She had been with my everyday since it began, it was now 6 months since the original symptoms had began and she couldn't bare to see me cry anymore. I'd been given the same antibiotics twice, I'd been given around 6 different types of painkillers and had my blood taken 7 times and numerous x-rays, I was (unsuccessfully) using crutches. I hadn't left the house in weeks and I had lost 23lbs.

The doctor in A&E sent for an orthopaedic surgeon and luckily enough my Mam knew him from work. My mam explained everything that had happened over the previous months, he took one look at my feet and then that was it...

'Well it sounds like arthritis to me'.

Arthritis.

And that's when I pulled into the slow lane.