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.
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:
- Mood swings or emotional lability
- Anxiety, including generalised anxiety
- Pseudobulbar affect, which involves uncontrollable laughter and/or crying
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 PBA.
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.
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.
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.
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.
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.
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.
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.
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
I was blessed with Primary Progressive Multiple Sclerosis. Who would know that one day I would be diagnosed with it after so many years trying to work out why I felt so rotten all the time. Bit of a shock to the system I can tell you, but well lots of people have things to contend with don’t they in life, and as we get older, bits start to fall off and we get older, and more tired.
Who would have thought that having MS would turn me from a happy fun loving person, who loved to talk and meet people and have lots of friends. I loved to entertain my family especially for Christmas and special occasions. Mike and I would often hold Bar B Q’s in the summer and he was actually a very accomplished cook with the charcoal. Life was good really.
Mike and I often went on holiday together and we would take his mother too. We went to USA, Greece, Brazil, Malta, corfu, crete, rhodes and other places. I was full of energy and had a quick wit and mind and well actually quite a good sense of humour. I had a great job, worked at least 60 hours a week, ran 11 learning centres and 54 tutors were in my care.
I have accepted my illness what else can I do really? It is here and now i have learnt how to deal with this uninvited visitor.
I hate it so much as it has taken so much of ME away and it robbed me of better times with my Mike.
I am never really sure who is actually standing in the mirror it looks like me, but well it doesn’t feel like me. It feels like my body and brain is there but like the cliff edge lots of who I was has been eroded away and I am kind of left with this accumulation of cells, and blood, and fibre and body that only has the capacity to actually exist with half of what it had. Like a glass half empty kind of feeling. Half empty
Hands up how many of you reading this have a calendar or diary, and its filled with dates and places or things you are going to do? I don’t have a diary or a calendar. I have a white board and if I am lucky to actually write on it a visitor is coming or I am booked to go and visit someone, do something really cool, if I have to change it at short notice I can simply WIPE IT OFF, like well my MS will have WIPED me out that day. I never know where this disease is going to take me in anyone particular day.
I can have a really good nights sleep and a rotten day, and vice versa.
Friends or family will invite me for a party, or gathering and I can write it down on my white board but I have no idea if well I will be well enough to actually get there.
Fatigue is my enemy and pain. Now let’s get this straight ok, fatigue in MS is not just feeling a tad tired and a quick sit-down on the sofa will resolve it. No way for people with MS its like being hit by the worse flu ever, then have to run a marathon. OK think about it, if you have ever had flu, and your body is just sunk into your mattress and you cant get up, that is MS fatigue. MS Fatigue can just hit you in seconds just doing something silly like talking to someone on the phone.
I am usually not too bad when I wake up and I have learnt to work around my fatigue. I do everything first thing but as the day progresses so does my fatigue a bit like a battery winding down. By 2pm I am wiped out like a hard drive nothing left in it of any use, and just resting. Just talking is exhausting and it can make me so tired I sit there yawning and gasping for air which must look pretty rude, but believe me I don’t do it on purpose.
Just going out is a huge effort for someone with PPMS. It takes a huge effort yes it is good to get out, but you know the consequences are going to be even worse fatigue when you get home, and pain.
Yes pain. There are some people even doctors sadly who think there is no pain in MS wrong. Yes some people when they first start their journey may not be bothered with too much Neuropathic pain it depends largely on where their lesions are located.
Mine are in my spine. I suffer Neuropathic pain 247, it never stops or gives me a break ever. I cope with it during the day because I am doing things, like writing this to distract myself. Now going out will make it worse because my brain has to work harder to keep me safe which makes me more fatigued and then allows the pain to run riot.
Pain burning, fizzing, tingling, buzzing, prickly, spasms and cramp, muscle stiffness, oh and one of the worse the ITCH. I dont mean a little itch, my hand and fingers will feel like I have had the worse CHILBLAINS ever and you cannot get relief. Lol the times I have had to check my scalp to make sure I didn’t have nits the itchy patch on your leg you scratch raw it is relentless. It can change in seconds. Its like a roulette wheel where will the ball land next…..
Just knowing if you go out it can give you so much pain you want to scream and so much fatigue you want to just stay on your recliner why on earth would you want to go out to deal with that, or have people come to see you and leave you like that?
Well you have to really try hard to make the effort but please whoever reads this and doesn’t suffer from an auto immune or chronic illness or MS, be patient with us, we don’t want to be boring or upset you, we are sick sadly and its hard really hard to be this way when you have led a really exciting and full life.
I had my family over for Easter lunch and I made a huge effort to put on food, yes it was all frozen and zapped in microwave but I really enjoyed myself, and later I had other members of my immediate family turn up and my Easter day was lovely, but now today even writing this I am so fatigued and in pain, I just want to curl up and do nothing, but I am determined to try and have a glass half full day for a change but at the moment my battery is winding down very fast, so I will close now, hope you have a little more insight into my journey.
Have a good day and thanks for reading.
When grief comes knocking on our door the aftermath takes a very long time to get over. Loosing a loved one, means you have to contend with grief, and it can be very hard for some people to deal with.
The worse things to deal with are the anniversary’s the holidays, and the constant reminder that the person has gone as there will be an empty chair, they used to occupy.
My husband used to sit in the conservatory on a black recliner rocker chair. When he died i couldn’t bear to look at it, and one day I swear I saw it rock, which freaked me out.
I gave it away, that empty chair was no more. It was gone, but sadly it didn’t fill the emptiness I feel everyday not having my beloved by me or near me to talk too.
The emptiness of grief is so hard to deal with. I feel forsaken, lost on a journey which I don’t want to be on. My heart is aching when will grief the unwanted guest in my house finally leave me?
Sadly I know when grief does leave me, there will be another knock on a door for someone else and again it will be that unwanted visitor who doesn’t even wait to be invited in.
Happy Easter to my family who have passed away, missed everyday and never forgotten, grief may visit us, but we can still keep the memory of our loved ones alive by talking about them, and how they were. They need never leave our hearts or our minds, and we can take comfort in the fact that they would have been a large part of who we are now.
My lovely hubby Mike, a kind and caring man, a loving man, always there to help others no matter how ill he was or tired he was, never would he let a friend down. He was amazing very clever. A keen fisherman, loved steam trains, spitfires (more the engines), he was a keen C B radio enthusiast and his handle was TIMBERJACK.
He was a very talented driver and won many cups production car trailing and grass track racing, he worked years ago with motorbikes and would go off to Europe with his friend who raced them. Mike was a brilliant engineer mechanical and electronics. He could fix any engine or car and always did a good job. A perfectionist.
An amazingly clever man sadly missed.
The many faces of mike.
Its soon to be his 1st Anniversary since he left me and his family and friends. I am still grieving everyday for him. Sad as when your together and your bitching at one another over silly things, or moaning about mess, or “where have you been” etc, it just isn’t important not really. If you love someone just love them for who they are don[t try to change them. Once they have gone no matter who it is, you will have to face that empty chair and then all the silly little niggles just seem so pointless.
I would love just once more to see oil stained hands on my front door where my Mike had been outside working on his car, and never thought to wipe his hands before coming back in, its all so well stupid now.
My tribute to my hubby I paid for a bench in his honour to be placed in the middle of our town so all his family and friends could still feel close to him. So many people knew him and loved him.
Remember just love your family and partners and cherish them because you just never know when it might all end. Mikes memorial bench, my friend superimposed another photo of him onto it. I can imagine him sitting there chatting to everyone, as he loved to chat. xxxxxxxxxx love you hubby.
There was a knock on my door, when i got to answer it a nice man stood there with a bunch of flowers. My brain being slow didnt recognise him to start with and I just thought it was a flower delivery (racking brain who would send me flowers).
He looked at me and said, “I bought too many flowers for Easter and thought you would like a bunch”. It was then I realised it was one of my neighbours a few doors down, who I am kind of just on speaking terms, hello etc.
He gave them to me and I CRIED THIS MORNING as I took hold of the flowers tears flowed from my eyes, I have never felt such comfort and caring, and realised that there are lots of good people about in this world.
He bought me flowers at the time I was sitting alone, thinking of another holiday without my husband or my mum. He bought me flowers without realising just how happy they made me feel.
What a wonderful family to think of me on this occasion.
I cried and he looked at me and smiled and went off, his mission to cheer me up complete. THANK you to a truly wonderful family who made a sick old women happy even for a bit.
How many of you have that cupboard in your home where you just kind of shove things in there when you have no where else to put it or its an unwanted gift you want to hide? Over time it gets fuller and fuller until its ready to spill its contents out onto the floor…..
It reminded me of the episode of “Friends” when Chandler found Monica’s secret cupboard.
So funny but we all have one don’t we.
Well finally for the first time in ages I was actually having a good day.
My care worker Jade and I finally decided to tackle my secret cupboard the one under the stairs located in the downstairs toilet.
Ugh it was full of cobwebs and boxes of goodness knows what, we could see plastic bags full of stuff everything looked sad and neglected as they were no use to anyone anymore, they were just hidden away out of sight out of mind.
We had a lot of fun finding things i had forgotten. Now I have 3 large boxes full of car boot stuff to be taken to be sold and a real feeling of accomplishment.
Now all my hidden junk I didn’t want anymore would be able to have new life, and new families who could enjoy them, the saucepans, frying pans, spatulas, kettle, camping gear, wine making paraphernalia, (worth a bundle), car radios, cassette players, lots of lovely Christmas decorations, saucepan rack and much more, would all find new homes ……………………………..
I even found 3 very large bottles of my best wine I used to make Beetroot bottled in 2011 it was the last batch I made. Boy its going to be strong and blow someones head off lol. Beetroot wine becomes fortified with age, like a really strong sherry.
Anyone fancy a bottle lol it comes with a warning that is for sure.
For me sitting there on my electric wheelchair helping Jade sort out all this stuff was a huge ACHIEVEMENT for me, I felt great just doing that one small task. If you don’t have MS or a chronic disability you cant comprehend how these little achievements can make us feel.
Now I have a clean empty cupboard………no spiders and items who will have new lives and give others lots of pleasure……
I wonder who will have the camping stuff and where the little kettle and frying pan will end up…..maybe France, or somewhere nice in England with a nice young couple starting their new journey. I hope their journey is a good one full of love and joy.
Even with all the pain I have had my journey has been a good one even though I lost the love of my life, I know he will always journey with me wherever I go.
Have a wonderful Easter all of you reading this 2018.
Remember maybe you too can find some hidden memories in your secret cupboard.
For me it was actually a good morning, I had a great nights sleep not too much pain and only woke up once took my med’s and fell back to sleep again bliss. You are not blessed with many nights like that with MS.
I nearly always wake up between 4am and 5am every morning. I like to wind down and have my coffee which I make without getting out of bed as I have my flask ready by the side of my bed. Ah bliss, the aroma of strong Nescafe wafting towards me, is like to me a whiff of fresh air. That first gulp of hot coffee sliding down the throat is just the best feeling ever. Who needs fags. Whilst I was waking up I would peruse the Internet, answers any messages, and check on my group which I ran for support with chickens, listen to music and just well chill out.
So well I get up at 7am, its always a struggle for me to get up as my legs have ceased up like some old engine which needs more than a tin or two of WD40 to get it cranked up and moving. Ah well my hubby would help me when it was particularly bad, but now he had gone, I had to just well get on with it. Bit by bit, legs out, body out, rest pause until I finally could stand up. Some mornings, I could swing my legs out and hold onto my commode chair and almost stand up straight with little effort but those days were fast receding. However, this particular morning it was good, I could get up yayyyyyy.
Routine is manage to get downstairs carefully with dog in tow I would hold onto the double banisters either side of the stairs, and 2 cats following. My walker was ready by the bottom of the stairs and my electric wheelchair parked by the wall it was going to be a tri-fold walker morning, I could use my legs to get about not hard wheels of my chair bliss and I was moving well enough to walk and hold onto my grab rails. I hated using the electric wheelchair and tried my best not too I have always been determined to keep on my feet.
I let the dog out for her morning constitutional then it was feeding time for the animals. The cats well they always seemed to have food, but hey you have to pretend to put more or their dishes otherwise they think they are starving.
Whilst they were eating, i would perch my bottom of my perching chair and get washed and dressed. I always keep my morning clothes ready to change downstairs its easier. If I am having a really bad day, sadly I would just slip a jumper over my PJ tops, and add some new underwear and trousers sorry but needs must and let’s face it who would know or care. Trying to take off a PJ top when you have little energy or arm and shoulder is in agony is simply not an option.
Wash quickly and it would be about 7.30am by then. I have some chickens little bantams which my husband and I kept. They are the reason I am still on my legs. Sadly when I lost my husband half had to go, and 3 more are leaving me next week so I will only have a few little ones left
The picture is of Ginger my frazzled frizzle. I had her as a chick, the breeder made a fundamental mistake by breeding two frizzle chickens together which causes twisting feathers and brittle feathers. She would wear her coat to keep warm in the winter.
The “GIRLS” always rush out when I let them out, they squabble, and squawk and moan at me for being late, then devour everything in sight, poop, preen, drink their water then they are off out of the pop hole into their garden if the morning is good. It was good this morning so they scrambled over each other to get out. The coop is easily cleaned and later my care worker or my grandson would give them a tidy.
Then it was my turn. I was feeling so good that morning, my legs were surprisingly loose not with the usual spasms and cramp just twinges, my music was on, a sixties tape which I loved. I really felt well GOOD.
It was such a rare feeling it made it all the more special for me. There I was getting my fruit and toast ready, chatting and singing to the dog who looked at me as though I had gone mad, perhaps I had. I don’t know about you but I am always talking to my animals.
It was such a lovely day the sun was out I found myself saying to Lucy my JR “I think I will take you for a longer walk today maybe we might even go into town what do you think girl?” She would look at me with a twist to her face as though she was listening boy one day I will get a real shock if she ever answers me. It was a Wednesday 21st March 2018 and I had no visitors or care worker on a Wednesday so I had to fill my day some how as it had become hard for me to be one my own, so a walk out would do us both good.
So we got ready, it was nearly 9am by then, I was watered, fed, tablets taken, all was good in the world.
I grabbed my coat and Lucy’s harness and we were off to the out shed which was located and attached to the house by the back kitchen door and side alley way which made the house known as an end of terrace property as we could get to the back through a side door.
It was a big shed which my hubby used to use to dump all his engine bits in. It had double patio doors. When I lost him I had it cleared out, and made into my scooter garage, with a ramp leading from the patio doors, it was easier for me as all I had to do was just open the double doors and put the scooter on walk and move it slowly up the ramp and out.
This morning was no different. I grabbed my walking stick, slipped my slip on canvas shoes on my feet, secured the house, put the scooter key in the ignition and turned the dial to low and started to move it slowly up the ramp after having opened the doors.
Suddenly with no warning whatsoever it came alive I swear it did. “Fanciful” no truth. It turned into a MONSTER. Not an MS one but a MonSter.
Without warning suddenly the tiller where the steering is wrenched itself round towards the left lifting the front up off the ramp and I lost my grasp on it, and how I have no idea I ended up the other side of the ramp with this thing kind of turning its steering to the left,
Lucy had gotten out of the way thank god, and I managed to grab hold of it again, and then without warning, it twisted itself towards the right and proceeded to come down the small area of ramp with me trying to hold onto a machine that had suddenly turned into a bucking bronco. I swear it did, like an idiot I was trying to hold on to it as it was trying to shake me off. I was just been shook about and before I knew it my whole left foot had been run over as the under carriage of the scooter dropped back down on my foot.
My scooter had become a mad bucking bronco I swear.
I was sent backwards and finally it hit the shed door to my house really hard and stopped.
Adrenalin kicks in I was just so shocked and frightened, Lucy was cowering in the corner away from the mayhem thank god. I dont know where I got the energy from but crying I just got back through to the kitchen I had my careline round my neck but my mobile phone was handy too, so I rang my daughter who lived a few minutes from her, and must have sounded pretty panicked as I found out later she RAN to my house omg if you knew her, you would realise how daft that sounded.
My first aid training kicking in, I some how grabbed a bag of rice from the freezer with some veg in it and got to the sitting room, and elevated my leg and foot and on the way I had some how grabbed my bottle of ginger beer and drank for the sugar. I was in so much pain my foot was starting to swell, Lucy was crying and whimpering as she knew I was hurt. I was just in shock by then and really don’t remember much, just vague.
My daughter came, got hold of my other daughter, and my son in law came, and he took me to the hospital. I was just so lucky as nothing was broken.
My very good morning, had turned into a total nightmare. The mobility aid that was supposed to support me had turned on me in a viscous attack, that is all I can say, it felt like it was out to get me. When my daughter tried to move it backwards away from the door, it did similar and she struggled to hold it steady.
When life had calmed down again, and I was recovering my grandson showed me the big shed door the scooter had actually bent the hinges this door had been there about sixty years and it would not close now so shows how hard that scooter hit it.
It would appear that the steering had broken or something I have no idea the technicalities of it. All I know is for weeks maybe even months I had been saying that my machine was steering towards the right, I had ended up in next doors hedge a few times.
The moral of this story is twofold.
If you rely on one of these machines, make sure you have it serviced regularly. Dont leave it to chance. It might just be a mobility scooter but it CARRIES YOU…..and it should be pavement or roadworthy as they are heavy and dangerous. They can turn on us and cause us injury.
Two make sure you have liability insurance and insurance on your machine, as if mine had gone nuts when I was out in town where pedestrians were I could have hurt someone.
Yes I was hurt but I also was given a serious lesson, if you rely on it make sure you care for it, just like you would a car.
Sadly the end to the story is Chucky is going to be turned into a go kart and I have a new scooter and believe me, it will be checked regularly, and I have an insurance for it now. It will start new but be well cared for. Chucky was second hand when I got him, and that was six years ago and he was never really cared for. I relied on him to keep me safe, and get me out, but I let him down by neglecting him.
NEVER NEGLECT YOUR MOBILITY AIDS. You need them to stay safe.
A reliable friend for six years who kept me sane, took me out so I could enjoy some life, always started first time even in the freezing cold, sadly now gone. I shall miss him as he has been a big part of my life. Always there when I needed him.