When your world as you know it is ripped from beneath your feet, what can you do? I remember the day it all changed like it was yesterday ‘May 30th 2000’ I decided then I would never allow my disease to become my identity; sometimes such things are out of our control.
Somehow I lost the run of myself, I became very depressed and consumed by the chronic pain, it is and always has been the most difficult symptom of my multiple sclerosis . I defy anyone to live with pain 24/7 and not lose the will to fight on. Things were very difficult over the past year I hit an all time low I even considered suicide, it would have been so easy to take pills and allow myself slip into a place without pain.
My GP noticed the change in my personality first, I was not making light of my situation it was sort of my trade mark to make some jokey comment at the most difficult of times. I am so thankful he opened the conversation one evening in January, he said he saw the sadness in my eyes and I just looked at him and said, you don’t know the half of it. I let it all out told him about how useless and burdensome I had become, I felt a failure a sort of creature whose only purpose was to survive between treatments for the pain and the battle to receive my treatment was my only focus; Jennifer was gone lost in the fog darkness that hung over me. My GP and I spoke for a bit, I promised to tell my husband how I was feeling and I was put on antidepressants, there was no quick fix it took a good four months before I could feel the weight of depression lift. I had to talk about how I felt with brutal honesty, no conversation came easy but I knew it was pointless unless I was honest.
Once I began to feel safe in the present, I was shocked that I had felt so low death seemed a better option than living. I had been so matter of fact about how I was going to die, I had not given any thought to the pain and devastation I would cause my family! I couldn’t understand how I was prepared to leave my daughter how had I fallen so low that I could easily inflict a lifetime of pain on her? What seemed so logical six months ago in the dept of my depression was now causing feelings of shame and anger, I had to learn to forgive myself for my suicidal thoughts, I know it was not really me who was prepared to die; it was my illness talking.
Fighting back is not easy and no I am ‘not’ great, wonderful or amazing, I am a woman who is fighting for as near normal a life as possible. I need laughter in my life and good music but what I need most of all is to love the new me!
If you or anyone you know is feeling depressed or suicidal please please talk to someone I swear it gets better.
Samaritans: 1850 60 90 90
Console: 1800 201 890
It has taken a good six weeks of tears and sadness to come to the point of balanced acceptance; that my life has changed forever. My journey began in September 2012 with the help of my twitter and facebook friends we began to put pressure on Dr Reilly regarding the health service cuts, I am a victim of the cuts living in chronic nerve pain, a pain that was being fed with the strongest pain medication on the market. I turned to my online friends and with your help I managed to keep going.
In early December my body began to fail under the pressure of fighting for my rights and eating pain-killers, it was all too much. The multiple sclerosis ravaged may brain and left me a paraplegic. At first all my anger was directed at the government, I was grieving for the loss of who I was and until I had gone through the stages of grief, I could not begin to heal. I took the happy pills for a few weeks but this was a journey that required me to feel, I did not want to accept this I ‘never’ wanted to accept it I was comfortable walking with a stick now I have my 3 wheel scoota! I wont lie and say I woke one morning and it was all wonderful, it is not and never will be. I have cried sat in silence for hours filled with regret for all the stuff I haven’t done I will never fully accept what has happened I am still trying to find balance.
I am getting stronger each day I have good friends and family around me and I will not give up the battle for those of us living in unnecessary pain to save money for the Germans! My life has value I had the time out I needed to take on the fight again, not just for myself but the thousands voiceless Irish left to rot at home alone. My physical ability may have changed but my passion to shout out against the injustice being doled out daily by the HSE is as strong as ever so watch this space.
This time last year I was full of hope for the future, I was back in college doing a level 7 train the trainer. I had plans for a business I was going to work in the corporate and community sectors, I even designed a program called A Better Tomorrow the plan was to help people cope with stress and achieve their goals; life was looking good for me.
Early August was when the subtle changes began a little drag of the foot I never even noticed it was my GP who first mentioned it. Then Reilly made his vicious cuts to the health system. The pain infusions of lignocaine I depended on to keep me pain-free was no longer available every six weeks I was having to live with chronic nerve pain which meant I had no choice but to take the strongest painkillers available. I was living like a rabid animal wanting to cut off my arms and legs to stop the unrelenting burning pain, I was also fighting the HSE to treat me the stress was unreal, it was the stress that caused my relapse and robbed me of my physical abilities. I walked with a stick for the past eight years, I functioned in society I lived a near normal life; not anymore.
My relapse hit my brain stem and lower spine, I can’t walk anymore and my bladder has a mind of its own. I went into hospital last week for treatment and tests, late Tuesday afternoon my neurologist sat with me Steve and Keira had gone home so I was to receive this news alone. The damage to my brain stem and spinal cord is severe and you don’t recover from lesions in these areas! My brain had escaped without any new lesions but straight up I will never walk again no more than the few steps I can take with my frame, this is as good as it gets!
All my dreams are gone, the plan is to make me a little stronger to run the wheelchair, I will still have the pain that is for life so every month I will be fighting the system for treatment while trying to adjust to being a wheelchair user, I have to apply for disability for the first time in my life and my chances of ever working again are almost nil.
This didn’t have to happen if I had not had to fight for treatment for my pain I wouldn’t have had the stress and the painkillers causing weakness to my body to the point the ms was free to attack at will. I am still in pain and taking tablets like smarties. I will be having my lignocaine on Wednesday two months after it was due! Thank you Dr Reilly your so called attempts to save money have left me having to rebuild my physical and emotional life, the stupidity of your decision will end up costing many thousands more than my €34 lignocane infusion as I will now be using services for the first time and attending more appointments than ever before. Nice one James!
After my admission into hospital on Monday morning I spent the day being subjected to long overdue tests, I sort of knew the official outcome well in advance but what I think and the Neuro confirms are two completely different things.
Late on Tuesday afternoon my Neurologist and his latest trainee arrived to deliver the verdict, my most recent MRI is not good and along with the two brain stem lesions I have a couple more in my lower spine. The good news is my brain is in very good nick a few old lesions that play about with my eyes from time to time but nothing to worry about.
This time the is no promise of a fix but a plan to build up my strength, I need to reduce my stress levels not something I see happening anytime soon, not unless the Government walks and society learns to care. I have worked all my life and for the first time I am about to apply for disability I have a right to be treated with dignity and respect as this process will be far from easy for me there is an element of failure of becoming what I have always hoped I would never be ‘a person with a disability’ people change, job opportunities are less, you get talked about and over in you presence!
I am now officially disabled and a wheelchair user but I am no less intelligent than I was before this relapse I have a voice and let no one ever try and shut me up. Once my treatment is over I plan to get my head down next week and write my long awaited trilogy of books, my daughter wants to design the cover so I may actually self publish even though I have a publisher interested we all know kindle is the way forward.
So I had so bad news and my street dancing days are over but I have a cool little scooter and cant wait to become the woman in the purple coat with the yellow hat. I always have been a socialist activist and plan to put more effort into this area of my life once i am well enough. I received the appointment for my lignocaine infusion on March 13th so once I get over the iv steroids I should be pain free for a month at least and hoping to get hubby to take me to Dublin for the march. I am still going to the EU with the 1 Plus 100 petition for the patients charter to be ratified, so don’t forget those email I desperately need to make it happen.
Last night I cried myself to sleep I was guilty for feeling sorry for myself when so many Jack & Jill Children need help. You see I knew one of their children and in the short time I spent in his company I fell in love with him.
Jonathan Irwin is one of life’s living Angels, the families who his foundation helps feel blessed to belong to this special group.
*I have changed names and places I am sure you will understand why.
I went to meet Jake’s family near Sligo around May 04 the plan was to spend a day with the family divided into two half days so I didn’t get in the way, in the first five minutes I lost my heart to Jake and even now I feel love for this little boy who brought nothing but happiness to those he touched in his short life. I held Jake kissed him repeatedly each one rewarded with the most beautiful of smiles, handing him over for a nap was difficult as I was happy to allow him sleep in my arms. I was there on a job and mum was ready to speak so I laid him in the arms of his nurse and stole one more kiss.
Jakie was premature and deprived of oxygen at birth and at three weeks old he had a brain haemorrhage that left him quadriplegic and using a ventilator. Mum explained if Jake had stayed in hospital he would have died from infection ‘after all where else do you find every bacteria and virus flying about only in a hospital, most patients can cope but my little man needed to be home where we could control exposure to the infections’ Jake’s room had an air purifier to keep the room as bug free as possible and a play area was set up with lights in his comfort corner.
I was nothing more than an observer in a house of joy all made possible by the Jack & Jill foundation Little Jake died peacefully at home a few weeks later and at Mum’s request the article was never printed although I did send her the photos I took with her permission. Even in her grief Mum was so grateful that her beautiful darling son came home and died with his parents and siblings around him.
When Jonathan Irwin spoke about the disrespectful way Minister Reilly treated him I could feel the tension in my brain rise, temper turned to tears. The big abortion debate is about to kick off with each side spending millions trying to convince people to join their side of the argument! People already know what the think about the abortion debate we are a well-educated country if nothing else so why not save the money give it to Jack & Jill help those babies born with life limiting illness go home to their families for as long as their short lives allow.
Lets not fight about what may or may not be lets care for the children already with us
Dr James Reilly has shown his only interest in our healthcare is to cut back save money and privatize the lot I read the news article some months back about his so called meeting with Jonathan Irwin I was angry this but hearing the story on the Saturday Night Show proved how little this Health Minister cares about his clients. People please stand up do something remember the old saying ‘there but for the grace of god go I’ I was struck down with MS over a weekend and life changed forever. I have been filthy rich and dreadfully unhappy, then I met Steve I was the happiest I have ever been in my entire life I even had in my arms the miracle child; enter MS the destroyer of my beautiful life in any given minute it could be you!
So here we are in modern-day Ireland a place where people must wait four years for a hip replacement or a child waits months at a time for follow-up for his eczema; modern Ireland with third world health service on the verge of privatization. The behavior of the HSE is akin to a company being run into the ground in order that it gets sold off on the cheap, so where is the benefit who wins? not the patient that’s for sure.
In the past seven months I have spent five in chronic pain my complaint to the HSE was given the preformatted written response with my details added to complete the appearance that an actual investigation took place. Before this bloody mess began I walked with the aid of a cane but the stress of living on the edge has caused a relapse which has left me disabled. I now have two new bright lesions on my brain stem and for the first time ever I have been put of medication for depression, I keep asking myself how can a health’CARE’ system treat service users so badly that we end up having to compensate for their inability to meet the needs of patients by filling our bodies with medications, while we wait like good little pixies for them to fit us in?
I for one have had enough I am fighting back and demanding my right to life, I don’t expect a perfect life after all I have a progressive disease but right now I am living a tortuous life. Often in films we see prisoners being tortured by having electric wires attached to their bodies, I am a prisoner in my home and every time my brain misfires I receive electric shocks so intense I can hardly breathe.
The Irish Government are not interested in the suffering of their citizens they are however very concerned with their image in Europe. If I can achieve the 1 plus 100 petition and send the case to the EU petitions committee we can achieve the publicity we need to tell the world what is really happening in this country. I am prepared to front the case and if anyone else out there is unhappy with treatment you too can submit to my petition, if your interested please email me email@example.com we can help write-up your complaint and prepare it for submission.
We need to stand up for ourselves our voices must be heard, if we continue to live as submissive citizens then we will have only ourselves to blame once the HSE is privatized in 2016; no insurance no treatment.