When my husband died and the funeral was over I realised that was it basically nearly 30 years of my life well sort of ended as i knew it. No more sharing moments with the same person, waking up to them, being with them, laughing with them, moaning at them, it was over.
Just how do you find the strength to carry on without a loved one when you just feel like throwing the duvet over your head and staying there and not facing anything. Anxiety levels going crazy.
They say the stages of the grief cycle has five parts to it. Well believe me I am no stranger to the 5 stages of grief mine started when I realised I could no longer work or live as a normal person ever again, when this journey of mine with MS started. OK I had no idea what the matter was, the label was immaterial actually because the results were the same LABEL or NO LABEL.
One day your working a job you love and you know your good at it, the next your wiling away your life on a recliner chair confused and feeling alone, as you cant understand why suddenly your life has just well fragmented and fallen apart. No more getting up excited for that day with your students, or working through copious amounts of paperwork to put into place a new qualification. No more challenging days, just days of drudgery, boredom, confusion and pain.
Oh my I loved my job so much, and i even met our local member of parliament who presented two of my students with a trophy for best students, I was responsible for their achievements because I cared enough to help them get through learning issues and do well in their chosen subjects which helped both of them move on to better things in life, that was the sort of person I was.
Sadly I left all that behind on the 11th September 2006 no more would I help others to achieve their goals, as I was struggling even to achieve mine and that was a simple one to get out of bed to face another day.
Yes I went through the 5 stages of grief way back then.
When I lost my mother on the 21st February 2016 I was devastated she wasn’t meant to die the way she did, and leave her family too early even though she was 93, but I coped and I coped well because I had the support of my husband with me. That was the difference between her death and my husbands. My husband Mike helped me get through the dark days of my mothers passing. He was amazing and always there for me. That was the sort of man Mike was loving and caring to the people he loved the most. He knew how much my mother meant to me.
So when I was suddenly faced with his death which was just not expected the shock of loosing my husband so quickly and all the subsequent events that came after just drove my illness onto a manic drive like some crazy pin ball machine, i was bounced from one emotion to another and every time i hit the sides the pain was horrific.
‘Normal functioning’ to start with was a must. Just to get up in the morning was hard enough without a disease like MS, but getting up in the morning with MS was really difficult and waking up on my own was so hard I had no buffer, no one to turn too for comfort just emptiness and that bloody empty chair.
No more Mike to scream and shout at when my MS was driving me insane. The quiet in the house was almost deafening which made a change for me, as usually I would be assaulted every day by my Mike chatting ten to the dozen, 2 televisions going on full pelt all day and with MS comes some strange and weird symptoms people may have never heard of like Hypercusis.
Now that is a beaut. How can noise make your ears feel as though they are going to bleed with pain. Believe me when I was having a bad bout of this my poor hubby got it in the neck as it would make me really feel irritable and irrational I suppose us ladies could even liken it to a really bad case of PMT.
Now there was no noise. Just me. Just me feeling isolated and wretched. I would have sold my soul to the devil at one point just to be able to shout at my hubby again – bargaining.
I suddenly realised my journey with MS was now going to be on my own without the support of my husband. He had been with me right through the journey and would help me whenever he could. Now I was facing it all on my own. How scary was that really to suddenly realise your support network was gone. If you had a bad night trying to sleep in pain I knew he was there to help me.
The times I had attacks with my Transient Epileptic Amnesia where I forgot who I was and he took over and got me to the hospital, now I am frightened of waking up to literally nothing. If I have another attack on my own how will I know to get help it scares me.
For the first month after he died and his funeral, I blamed myself for his death. Perhaps if i had insisted he had the doctor out on the Sunday he would still be with me now. I should have really told him straight I am getting the doctor out and that is that, but he made such a fuss about it, and getting into a state it was making him worse, so I left it, but made sure I kept an eye on his stats, and he did improve by Sunday evening.
I blame myself for not staying with him all day on the Monday whilst he was in hospital but he seemed so much better and wanted his family to visit and he knew with my MS it was too much for me, and he wanted me to go and rest.
I HATE MY MS, it robbed me of having more time with him I could have been with him and comforted him, but no my MS WAS not about to be compassionate enough for me to have that one good thing in my life a moment more with my husband so I might have more memories of him to remember him by. No it was selfish. The next time I saw my beloved he was in a death coma and I couldn’t say anything to him although I am sure he did know I was there, it wasn’t the same.
I was so angry with myself and then I became angry with Mike, it sounds totally irrational even writing it down BUT I was angry with him for dying. How could he leave me he never fought for us. He could have stopped smoking earlier, drank less so many stupid things going through my mind. Why couldn’t he have tried harder it was like he had given up on us both. I never gave up no matter how bad I felt, how ill I was how much pain I was in, I never gave up, as I loved him and wanted to be with him. I wish i had given up now, anything would have been easier then enduring this pain.
I can cope with the pain of my MS but the pain of loosing Mike is really hard. We were not ready for a loss like this. He only retired in 2015 and even then he went back and forth to work when they needed him. He was such a strong person even when he looked frail and ill and believe me at times he looked terrible he would always bounce back.
Oh my god we were supposed to spend the rest of our lives together in retirement. What was it all for, my fighting this disease every day so that we might have a life together. I looked forward to retirement, we had plans that is why Mike went to the Isle of Wight that fateful week before he died, as we really wanted to be by the sea. Just be together and do some fishing, chilling and of course arguing why not, but have a life together after working so hard. We both of us started work at around 14 years of age well that was the age of my first job.
I waited to find the right man, and we found each later in life I was in my forties we had nearly 30 years together, 10 of which were challenging with my illness and Mikes illness but we stuck with it and stuck together.
Now I sit here writing this on my own, my journey still goes on, Mikes was denied him by a higher being for some reason only known to the almighty. Mike never deserved to die like that he worked so so hard everyday. He never took time off work unless he was really sick which was rare.
I cant bear it in our home now. I expect to see him sat in the conservatory having his cigarette and playing with his little radio watching the aeroplanes land he had a software on his computer. He was a very clever man, and had his amateur radio licence. He would spend hours talking to people all over the world on CB radios.
Timberjack was his handle. All gone now. We will never go fishing again on Minehead pier, he will never again win a trophy with his classic cars. The realisation hits you suddenly you are supposed to get to the point of acceptance of a death, how can you really?
Maybe I am just taking longer as I just still feel so angry at his loss. Where is the motivation to move forward in my life? How can I find the strength to keep going when my MS is constantly kicking my arse all the time.
Why am I bothering really to keep healthy, keep going what is driving me. I wish I knew the answer to that as I sit here surrounded by my dog and 2 cats listening to Dinah Washington, I’m mad about the boy which kind of seems quite apt at the moment. I am mad about the boy, mad at him and mad about him.
I keep going my motivation in a way is to make sure no one forgets Mike, I don’t want his memory to just die with him, fade away so he will just become a distant memory of a person who lived. I want people to be reminded of him how much he touched so many peoples lives, enriched them, changed them, helped them. I want them to appreciate in life you have special people around you and you must NEVER ever ever take them for granted as one day they just might not be there anymore.
I hope my MS will let me get through this and allow me to move forward. My next step I feel is to move to a smaller place. I came here with Mike, and I feel perhaps now its time to leave here with him, and start a new chapter in our lives and another part for me of my journey with MS. I am not going to let my MS defeat me even though every part of my being is screaming for me to let go, if I do that then I loose him again, and I am not prepared to do that just yet.
Now the real work begins I have gone through once again the five stages of grief I have finally accepted his passing, and now I need to find myself again.
My next blog – moving forward and acceptance and change.