Hello.
First time poster but have visited the site a few times over the last couple of years for information. I suffer from the usual male syndrome of not being able to ask for help but I've hit an impasse and I just don't know what to do, or where to go.
My partner suffered from M.S. (Diagnosed in 2011) she was the worse person ever to fall ill with M.S. Fiercely independent, extremely active, 6 weeks away from qualifying to be a nurse and with 2 kids we had every reason to be happy. Then M.S came calling and she ended up taking a double relapse and spending 2 months in hospital. To her credit she went on to qualify as a nurse.
She responded well to Tysabri and was able to start work as a nurse. She worked hard, mainly nightshift which took it's toll and she struggled terribly with fatigue. She never moaned, just got on with it. One treatment day she suffered an infusion rash and they decided to take her off Tysabri and put her on Gilenya. (This is the pivotal point right here, this decision is I believe the blame of all the woe that followed.)
She had to do 12 weeks washout from the Tysabri before they could give her the Gilenya which she had 3 relapses on. They then realise the infusion rash was an allergy to plasters and decided to put her back on Tysabri. Another 12 weeks washout from Gilenya by the time they got her on Tysabri she had suffered cognitive decline, suffered confusion, memory loss, loss of memory recall. She had to quit her job, she withdrew from family and friends because she felt she had become "stupid." It was truly heartbreaking. Over the course of the next two years her cognition declined steadily. Strangely enough her mobility wasn't that bad but she suffered from what I can only describe as a dementia like illness. Over the last 3 years i had decreased my working hours to care for her and our two kids. First down 24, then down to 8.
Monday 26th Feb, my beautiful partner passed away at the age of only 37. We were sitting chatting one minute on the way to the loo, next she said she felt sick and collapsed in my arms and she never regained consciousness, dying in hospital 6 hours later from clots on the lung. Out of a multidisciplinary care team not one even mentioned that blood clots might be an issue, no blood thinners, no surgical/compression socks, it wasn't mentioned once. This angers me as her death was completely avoidable.
I am lost, most days i don't even feel like getting up. I do as I still have two kids who need me (16 & 10) but i'm on autopilot, every thing I do is automatic. I go to bed at 9pm when my 10 year old goes and I lie awake usually till 2-3am before I finally fall asleep. I'm back up 7.30 to get them up for school. When they are at school I just sit at home and essentially wait for them to be finished school. I do my housework then wait.....just sit and wait.
I've increased my hours back up to 24 over 3 days as money is tight, after my partner died they stopped all our money and made me apply for Universal Credit, i've never recovered from the debt that process put me in as of yet. It's been horrendous. I'm living wage to wage and if anything big was to go wrong i'd be snookered as I have no savings. I'm down around £700 a month with my partner gone and I still have the same amount of bills if not more as I now have half of a 7 grand funeral to pay for. My 2 children have birthdays coming up and I literally have no spare money. I'm dreading christmas for a whole host of reasons.
My partner and I weren't married but had been together 18 years, she was best friend, partner, my soulmate. My life is in limbo since she's gone and I don't know how to move on. I've forgotten how to live life. I know it takes time and I know i'm being very hard on myself, probably because part of me blames myself for her demise. She died on my watch and I feel responsible. Plus I should've shouted harder when they took her off Tysabri but we trusted the Drs knew best and knew what they were doing. I am angry, I mostly blame them for what happened to my partner, and i blame them for my anger which makes me sad as I was never that type of person. I don't want to be angry.
I've come to realise i'm suffering from depression and anxiety. I've did the classic thing of trying to run from my grief but i've now realised i can't run fast enough or far enough. I've consciously tried to trick myself into believing she hasn't died but simply somewhere else in a way of not dealing with it or as a way of dealing with it, i'm not sure anymore. I can't even bring myself to visit the cemetery.
I need help but like most men i'm terrible at asking for it or terrible at looking for it. I've made an appointment with my G.P but she's on holiday until 23rd Aug. I feel like i'm failing, failing my partner, failing my kids, failing myself. I really don't know what to do anymore.
To top things off I decided to quit smoking, single parent now, gotta take better care of myself plus I can't afford to smoke but my nicotine withdrawal has only added to my anxiety.
First time poster but have visited the site a few times over the last couple of years for information. I suffer from the usual male syndrome of not being able to ask for help but I've hit an impasse and I just don't know what to do, or where to go.
My partner suffered from M.S. (Diagnosed in 2011) she was the worse person ever to fall ill with M.S. Fiercely independent, extremely active, 6 weeks away from qualifying to be a nurse and with 2 kids we had every reason to be happy. Then M.S came calling and she ended up taking a double relapse and spending 2 months in hospital. To her credit she went on to qualify as a nurse.
She responded well to Tysabri and was able to start work as a nurse. She worked hard, mainly nightshift which took it's toll and she struggled terribly with fatigue. She never moaned, just got on with it. One treatment day she suffered an infusion rash and they decided to take her off Tysabri and put her on Gilenya. (This is the pivotal point right here, this decision is I believe the blame of all the woe that followed.)
She had to do 12 weeks washout from the Tysabri before they could give her the Gilenya which she had 3 relapses on. They then realise the infusion rash was an allergy to plasters and decided to put her back on Tysabri. Another 12 weeks washout from Gilenya by the time they got her on Tysabri she had suffered cognitive decline, suffered confusion, memory loss, loss of memory recall. She had to quit her job, she withdrew from family and friends because she felt she had become "stupid." It was truly heartbreaking. Over the course of the next two years her cognition declined steadily. Strangely enough her mobility wasn't that bad but she suffered from what I can only describe as a dementia like illness. Over the last 3 years i had decreased my working hours to care for her and our two kids. First down 24, then down to 8.
Monday 26th Feb, my beautiful partner passed away at the age of only 37. We were sitting chatting one minute on the way to the loo, next she said she felt sick and collapsed in my arms and she never regained consciousness, dying in hospital 6 hours later from clots on the lung. Out of a multidisciplinary care team not one even mentioned that blood clots might be an issue, no blood thinners, no surgical/compression socks, it wasn't mentioned once. This angers me as her death was completely avoidable.
I am lost, most days i don't even feel like getting up. I do as I still have two kids who need me (16 & 10) but i'm on autopilot, every thing I do is automatic. I go to bed at 9pm when my 10 year old goes and I lie awake usually till 2-3am before I finally fall asleep. I'm back up 7.30 to get them up for school. When they are at school I just sit at home and essentially wait for them to be finished school. I do my housework then wait.....just sit and wait.
I've increased my hours back up to 24 over 3 days as money is tight, after my partner died they stopped all our money and made me apply for Universal Credit, i've never recovered from the debt that process put me in as of yet. It's been horrendous. I'm living wage to wage and if anything big was to go wrong i'd be snookered as I have no savings. I'm down around £700 a month with my partner gone and I still have the same amount of bills if not more as I now have half of a 7 grand funeral to pay for. My 2 children have birthdays coming up and I literally have no spare money. I'm dreading christmas for a whole host of reasons.
My partner and I weren't married but had been together 18 years, she was best friend, partner, my soulmate. My life is in limbo since she's gone and I don't know how to move on. I've forgotten how to live life. I know it takes time and I know i'm being very hard on myself, probably because part of me blames myself for her demise. She died on my watch and I feel responsible. Plus I should've shouted harder when they took her off Tysabri but we trusted the Drs knew best and knew what they were doing. I am angry, I mostly blame them for what happened to my partner, and i blame them for my anger which makes me sad as I was never that type of person. I don't want to be angry.
I've come to realise i'm suffering from depression and anxiety. I've did the classic thing of trying to run from my grief but i've now realised i can't run fast enough or far enough. I've consciously tried to trick myself into believing she hasn't died but simply somewhere else in a way of not dealing with it or as a way of dealing with it, i'm not sure anymore. I can't even bring myself to visit the cemetery.
I need help but like most men i'm terrible at asking for it or terrible at looking for it. I've made an appointment with my G.P but she's on holiday until 23rd Aug. I feel like i'm failing, failing my partner, failing my kids, failing myself. I really don't know what to do anymore.
To top things off I decided to quit smoking, single parent now, gotta take better care of myself plus I can't afford to smoke but my nicotine withdrawal has only added to my anxiety.