The fallout from bereavement – and the challenge of EMOTIONAL issues that come with Multiple Sclerosis.

As my husband took his very last breath on earth and went silent, little did I know the after affects and shock that would continue for months afterwards affecting me emotionally and physically.

You have these diseases given you like Multiple Sclerosis, but weirdly enough whilst I was with him for HIS last journey I forgot for just a time I actually had it, my only thoughts were to hold him tight and squeeze him and make his last minutes with me, of comfort and love.  I just had no other thoughts but I do remember crying “don’t leave me, don’t leave me I love you………”   The rest is just a blur.

I realise people reading this will not have MS, so they may not be aware of how just having it can screw with your emotions, it is actually part of the disease as lesions may invade into parts of your brain that can turn you into a jabbering lunatic with the added stress of grief.  There are not many people with MS who don’t actually have this with their MS but will be with varying degrees. (Remember if you have been following my blog MS is classed as  a snowflake disease everyone is different).

For the uninitiated:

Common emotional symptoms that can occur with MS include:

  1. Mood swings or emotional lability
  2. Anxiety, including generalised anxiety
  3. Pseudobulbar affect, which involves uncontrollable laughter and/or crying
  4. Stress
  5. Depression

So without adding anything extra we are already up against it. I have had all the above. My journey being a long one with MS and not knowing why I was so sick wore me down and yes depression was part of my issues.

I cannot cope with stress at all, and found myself shutting down on things or people I knew would actually affect my stress levels, so that I may survive another day without an exacerbation of symptoms. Oh yes did I not mention it, any tiny bit of stress can trigger a myriad of symptoms you thought had gone. So exit stress if you can obviously but sadly it is not always possible.

Oh and yes Number 3 above is real, I have had it. Its bizarre PBApba10

Poor Mike (my hubby) at times when this has happened to me I am sure he thought I was loosing my marbles. You can be watching a show on T.V. which is not even sad and start to cry then it turns in manic laughing. Before I knew what it was in my own mind I thought I was loosing my mind.   Once I realised it was PBA I was actually more able to deal with it.

When mike died later I did this the same; my emotions were are such a high level it triggered a PBA attack and it made me feel awful.  Thank goodness it was in the privacy of my own home.

If anyone reading this has lost a loved one and is responsible for dealing with their death you are suddenly faced with so many things to do that your Adrenalin thankfully kicks in and you don’t even have take time to draw a breath or think about grieving for the person who has just left you.   I knew even though I was ill it was my responsibility to make sure my beloved had the best passing anyone could have out of respect for him and all he gave to me and our marriage.

I was given a number to ring the next day to report his death to the bereavement office and have his death registered to enable me to ring a Funeral Home. All the time I was in shock yes, but comforted by so many people my brain just shut down on the tragedy that had occurred and somehow really I don’t know how perhaps auto pilot I managed to get through the next few days in a dream world just going through the motions. I cant remember much to be honest just basic stuff.

Everyone is always telling me that I am a strong person you will get through this. What is it about this phrase that is so easily said to people is it for comfort?  You will be fine your a “strong person”.   Am I?  Sometimes I doubt that.

I am good at covering up my feelings that is for sure. I find comfort in humour one of my ways to cope when facing stress is to binge on comedy on the T.V.  I have been blessed with an amazing sense of humour and use it to deal with stressful and awkward situations.  Somehow I follow my father in that in me is an inherent  and deep rooted urge which for me comes in the form of  a woman’s gotta do what a woman’s gotta do and my father was the same (but obviously I have changed the gender).

I have the ability to stay focused and get things done you just have to point me in the right direction and like a clockwork toy as long as you wind me up (not literally), I will keep going regardless of what is going on around me (I can blank it out), and just get on with it. Does that make me a strong person I have no idea.

“The weak fall, but the strong will remain and never go under!”
Anne Frank, The Diary of a Young Girl.

I needed all the strength I could muster for what was to come.

A surprise phone call from the Bereavement Office sent me into a tail spin of anxiety, emotions, and depression.

I can remember what the lady said as if it was today. “Mrs Trim condolences on the loss of your husband MichaelTrim, sorry to bother you but the Coroner would like to talk to you as the attending doctor will not sign the death certificate off on your husband……….”

Enter the Coroner…………..

The dreaded phone call from the Corner came a few hours later.  My brain was in a spin….for me seeing coroners portrayed on T.V. meant all kinds of things like wrong doings, mysterious death yet I was told at the beginning my husband diagnosis on entering hospital was Pneumonia with Sepsis and the next 24 hours were crucial, so his death wasn’t unexpected and it had prepared me for possibilities. ae6963c9e5546eabd63fefb4b946111f

I had visions fleetingly in my brain of some mad nurse haunting the corridors of the hospital seeking out the weak and filling them with a syringe of some obnoxious chemicals what goes’ through your mind is quite bizarre.  It was almost real like a slow motion picture of a sinister figure seeking out my husband.  I felt finally i was going crazy right?

I shook this weird image out of my brain and tried to listen to what he was saying.  He kept asking me if Mike had worked with asbestos, well I know he had over the years as he often told me he thought his COPD was down to this fact rather then smoking (most smokers have to find a reason or an excuse why their smoking is not harmful). It was odd though as his oxygen levels were always very high you would think someone with COPD would have low oxygen.

Anyway back to coroner they were investigating the possibility of an industrial death so would have to perform an autopsy as the doctor attending wasn’t happy with the way my husband died to the actual evidence and test he had. The word AUTOPSY made me feel physically sick I had to hang onto something for fear of falling.  The idea of my poor Mike being  subjected to this ordeal was horrifying.  My stress levels were hitting the roof and I felt as though i was going to loose it completely.

It was bad enough loosing him, but to think of him that way was horrible in the extreme. The coroner assured my husbands remains would be dealt with respectfully and would get an answer as soon as possible they did the autopsy on the 10th October.

Mike just hated being cold and again I know weird thoughts intruded my brain of my poor hubby laying inside one of those cold drawers in a mortuary he would have hated it, and sadly was there for 7 days before the autopsy then what seemed an age before I could finally lay him to rest.  Really stupid thoughts I mean he had died so wouldn’t be feeling anything BUT………….honestly he hated the cold with a vengeance.

In the meantime remember I am also dealing with telling the family, organising his funeral so many things to deal with. Paperwork coming out of my ears as the saying goes so much to sort out even for a healthy person is challenging.  68c1836a80a78b8cec227fa236773d9a

Having to remember to inform so many people of his death oh you can do it once now thankfully I did use that service but it didn’t work exactly as I found out later as some company’s were missed out.

I met with the funeral director and organised the funeral, wake, and the food and time just passed in a daze I have no real recollection of the days as I was just on auto pilot. I couldn’t quite get it in my head my lovely husband I had been with since 1991, I would never see again alive, never hear his voice, or see his lovely blue mischievous eyes or moan at him about leaving the place in a mess.   Never talk to him about the world and its problems, share moments both good and bad.  He was gone. Just gone.

In the background ever vigilant was my MS just waiting for me to crack up, to get weak and allow it to run riot in my body and cause havoc but how; I have no idea I never allowed it to take over, I had just too much to deal with, I wanted my husbands passing to be the best it could be and to that end I spent a lot of time planning and shutting everything else out and then the second phone call from the coroner came.

The Coroner rang me quickly on the 11th October to tell me the autopsy was inconclusive and they would have to take samples of tissues and send them off to a special laboratory it could take 2 months to get answers, I was so upset and shocked. I had no idea what was going on, surely it couldn’t be all that complicated could it?  If he had asbestos poisoning wouldn’t it have shown but apparently it doesn’t work that way and he also dropped another bomb shell at my feet there would have to be an inquest which was booked for the 3rd March 2018.  I simply couldn’t get my head around any of this, 2018, inquest, inconclusive my brain was just in a whirl.

To be honest I didn’t care how he died, he died, and I just wanted to be able to mourn him, how could I with all this hanging over my head.

Worse was to come on the 13th October another letter from the Coroner arrived.  I recognised the cream/yellow envelope so I quickly opened it not really expecting much perhaps just a permission slip or something but what I read well it really put my MS into a tail spin that day which took several weeks to get on a kilter of some normalcy.

I mean really how insensitive for the Coroners Office to send a letter just after your loved ones passing actually asking what would I like them to do with the MATERIAL they had removed for histology testing. letter from coroner

Suddenly I am faced with a decision about samples they had removed. The point being they had to keep them anyway for 12 months before they could legally dispose of them.  Then reading what Material they had taken made me feel sick I almost passed out, sounds a bit dramatic I suppose but my husband had only died 10 days ago I was trying to get used to that idea, then to have to face decisions and talking about bits of tissue they had removed from him was horrific. 

07459e515f24dced358eb19487ae7a47

I was just shaking and crying, the letter both pages just slipped from my hands and fell floating to the floor almost in slow motion to land by my feet. I was crying hysterically by then and sobbing so hard I thought I would die and lucky for me I was able to grab hold of the hallway grab rail otherwise I would have fallen badly.  I managed to make my way crying and blind with tears to the sofa to just sit down and break my heart because finally the pain of Mikes death had hit me.  It had come down to the realisation that my husband was just a body with tissue and material which needed to be taken from him to find out why he died so suddenly.  It took me a long time to get myself back to some semblance of normality after reading that.

I actually contacted my solicitor who was advising me about the possibility of his death being industrial, not because I wanted compensation but I wanted justice for my husband if he had died because of something noxious like asbestos.  She was brilliant and calmed me down and took over and contacted the coroner and told them that there would be no decisions as yet until the results were in from the tests.

I have to say that I really don’t know how I got through those days before his funeral we were able to carry on with arrangements and I was given a temporary Death Certificate which enabled me to continue with the plans for his funeral thankfully and my lovely Mike took his last journey on  the 25th October at 11am 2017.

When I got to the crematorium on that sad day following my husbands coffin in the hearse I was shocked as there was a queue of people waiting to pay their last respects to him. It warmed my heart and made it all so much easier to bear to see all those faces some I knew others strangers there must have been over two hundred mourners turn up which just showed how much love people had for him.

His funeral was wonderful. It was a humanist funeral and we celebrated his life. He loved spitfires always wanted to fly one or be in one, also loved the engine sound (Merlin), so I gave him his last wish and his coffin had spitfires printed around the outside it looked brilliant I have to say and my grandson Conner wore his flight jacket as a poll bearer and when the curtains went down for his last journey we had the sound of spitfires flying over head as a tribute to him, it was amazing.

The reading was all about Mike and what sort of man he was.  It was all so comforting.  Yes I cried buckets but I knew he would have loved his send off. We went to our local social club across the road from us for his wake he would have loved that and it was well attended and everyone had the chance to talk about him.   If he was looking down on us, he would have been really pleased I know it.

How I got through that day I have no idea I don’t remember much to be honest, but my family were very supportive and the love towards my husband shown by everyone there made it all bearable.

When the funeral is over you hope you can start to heal and grieve but sadly when you have the question mark hanging over his death it is simply not that easy. You just don’t know how to deal with it. 

I was starting to get weak. Suddenly from a lot of people around me all the time there was no one the support I had gone. I was just left to sit on my own and the feeling of loss was so overpowering.

I had lost my husband, my extended family a huge part of my life was just wiped away when he died.  All his friends who I had taken into my home and heart and his family slowly distanced themselves from me, and I found myself more and more alone.  Nearly 30 years wiped out. Then the MS found my Achilles tendon loneliness, sadness, despair and feeling FORSAKEN.  My daughter painted me a picture of me as a forsaken angel it was exactly how I felt.

29541322_594261887592270_8980986443216584799_n

My MS ran riot giving me anxiety and panic attacks, depression and pain oh yes the pain someday’s was just too much to bear not just the physical pain but the emotional pain of losing my husband.

My only hope was to have counselling which i embarked on and it did help, and slowly support from family and friends became more routine, and my husbands sister Lynne would visit and ring me regularly and still does and we talk.  It all helps and my family have all been good and tried to support me as much as they can.  My friends on Facebook always supportive without a lot of them I don’t think i would have gotten through this time.  I even received a beautiful bouquet of flowers from a friend in America Maureen we have been friends with for quite a few years now, it was so touching I cried. I had so many lovely cards which I have kept and one day will take the time to put them all in a scrapbook I received other flowers from Facebook but my memory is not good now and I disgracefully have forgotten who sent them, if they read this I hope they understand and will forgive me.

maureens flowers

I made a tribute to Mike in the conservatory. He just loved sitting in the conservatory it was his place.  I set up photos and a board of all the things that Mike did over his life. He was an amazing man.  l added the book of condolences people wrote in so if anyone does come to see me they can share their experiences of him and memories and write it down if they feel they would like too. I often write in it and it does comfort me.

I brought his ashes home and he is in the conservatory which he loved.

I have to tell you about an amazing thing that happened the day I bought him home with my two friends, Jane and Jade.

We have chickens especially 3 very large rare hens Pavlovskaya a special breed.  Mike loved them and they loved him. Mike would spend hours with the chickens he had an empathy with them.  The Pavlovskaya would seek him out and I knew they had been in with him as they would leave their evidence of feather or err poop.

When we bought Mike home there in front of the conservatory were all three Pavovskaya stood in a line, and all the other chickens were behind them almost on parade saluting him. Non of them moved they were very still and just watched us then suddenly they just turned around and moved away, it was one of the weirdest things we had ever seen. I am convinced they were paying a tribute to him.

The MS is out of control sadly and progressing at a fast rate I allowed it to take a hold in my weakest moments. Its hard enough to lose someone without MS, but when you are ill with a disease that zaps you at every opportunity you need all the support you can get.

IF you ever have a friend or member of family with MS and they appear abrupt or irritable or bad tempered and argumentative, forgive them.   Mike did, he knew when I was angry and yes screaming at him for something stupid it wasn’t me doing it, it was my illness, he would just look at me, not retaliate and wait for me to calm down.

We don’t  want to be this way who does.  We don’t want to spend days anxious, crying and laughing at the wrong times, totally depressed and devoid of emotions. or the opposite and ranting and raving at the most stupid things. 3566756900000578-3646875-image-a-14_1466173868638

Just put yourself in our shoes for just a day, and see how hard it is.

Yes the fallout from my husbands death is continuous even after seven months it is not slowing down.   The worse part is the anxiety and panic attacks and STRESS I am experiencing I am hoping with time and healing it will all settle down.

Just remember if you know someone who has lost a loved one, its all very good to comfort them at the time, but grief sadly is ongoing and doesn’t just go away, and in actual fact becomes harder after the funeral and it is then that someone mourning needs more support so just a little message, “how are you” doesn’t have to be much.

Finally after waiting 2 months I had the last phone call from the Coroner. . The sample for histology that was sent came back with no plaques for asbestos.  Without the plaques they could not go forward with an industrial death however,  there was fibrosis found in his lungs which is a typical thing to see if someone was affected by asbestos but can also be caused through infections and other agents.

Two doctors had to confer about the results  and they have decided to log it as a natural death caused by  pneumonia which finally enabled me to register his death.  I felt relief to be honest total relief and I think I even shocked the coroner when I said what a relief. The reason being?  It was OVER, I could now grieve why they wanted to do an autopsy has never been made clear to me, as I know the admitting doctor when Mike was taken to hospital clearly said he had Pneumonia with Sepsis so what happened in the 2 days he was there is always going to remain a mystery.

The inquest was cancelled and we wouldn’t be put through any more pain over his death.

My journey now begins without my husband that is going to be the hardest journey of them all.   Its been hell for months and my MS relentless now its time I started to let myself heal.  I just hope the beast or the MonSter allows me to take a break.

Depression is a real thing remember a person may look well, and happy and smiling but behind the mask they can be hurting really bad.

“Man goes to doctor. Says he’s depressed. Says life seems harsh and cruel. Says he feels all alone in a threatening world. Doctor says, ‘Treatment is simple. Great clown, Pagliacci, is in town tonight. Go and see him. That should pick you up.’ Man bursts into tears. Says, ‘But doctor, I am Pagliacci.’ ”

Trying to deal with bereavement….moving forward and coping mechanisms…………

watch out for my next blog..trying to move on

stages-of-grief

 

 

 

 

 

 

 

 

 

 

 

 

 

One thought on “The fallout from bereavement – and the challenge of EMOTIONAL issues that come with Multiple Sclerosis.”

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s