15th June 2018 Me
In support of Men’s Health Week 2018, yesterday we shared the first part of Marc Carter’s mental health journey as a Dad and a full-time carer. Here, he kindly shares the rest of his story.
A new chapter
So, I was a full-time Dad but I felt the need for other stuff to do and get involved with. I found a few events in the borough for Carers. That was me! I could go to those! Most were full of older people and I felt very out of place, but I made some great friends and they taught me a lot about myself. We kept meeting at the next event, it was nice to see them. I hadn’t had friends in a very long time, and I had found some in unlikely places.
The events were ok, but it was all very cyclical and we tended to cover the same ground in every meeting. We learnt nothing new, and the same people went to everything. I decided to mix it up a bit. I started a project, for Carers, which became a Carers Café, which became a Carers Centre with rooms we used to generate huge amounts of money. My little charity was suddenly turning over close to half a million pounds a year. I wanted more, I wanted to take it in new directions, but I had no enthusiasm. I didn’t have the energy to see anything through. What was happening to me? I couldn’t be bothered to do anything, I was so tired, and I hurt really bad all of the time.
Meanwhile, at home our thoughts were focused on whether Ayesha was autistic. I told everyone who would listen that she was, I had the staff at nursery and then primary school all saying it was just this or that and she would catch up sooner or later.
Many blood tests and scans and x-rays and tests and questions and investigations and other samples later, and nobody had a clue what was wrong with me. I just had to get on with it basically. I forgot to say earlier that I hurt my back badly in 2003. I now have a weak back that hurts easily. I was prescribed medication but I faced the fact that I would just hurt for the rest of my life, which I found very depressing. I decided I had Chronic Fatigue Syndrome as I ticked all of the boxes, but I had other stuff that wasn’t on the list. It would have to do. I didn’t use it as an excuse, but the pain made running the charity a challenge. I never took a penny in salary or expenses, and I was still a full-time carer and daddy, so when the kids were home and needed me or had appointments, I was there.
In June 2015 we went on a family holiday to Somerset. Gorgeous weather, we were staying in a large rented thatched cottage for a week, we had family come and stay, we had Ben’s PA come with us to give us a bit of a break. There was a hot tub we all basically lived in. We didn’t want to go home. My brother lives 10 miles from where we stayed. Maybe we could move here? We had both always wanted to live in Cornwall which is just that bit too far away, so how about Devon?
We went home on the Friday. The following Friday in Birmingham there was an event for NHS staff with all of the trusts from around the country being represented. We went along and Mandy made a bee-line for Devon’s stand. Was there a chance of a job in Devon? They whisked her off and an hour later came back and said she had a job offer open for 6 months. If we wanted it, we had to decide by January.
7 weeks later we moved into our new home, on a farm, in rural North Devon. Leaving the charity I established didn’t go well, I tried to leave on the best of terms, but it didn’t work out that way.
Things started well, I was relaxed and care free, just in a huge amount of pain. The doctor’s surgery was tiny, you could walk in, sit down and see a doctor within half an hour. The doctor was lovely and sent me for different tests. After 6 months I was diagnosed with Fibromyalgia. Ok, I don’t think that’s what I have, but it’s better than nothing. It seemed too much like a catch-all diagnosis, a default for when they don’t know what else you have. Slowly they changed and tweaked my medication, I felt better than I had in years, I still had bad days, bad weeks, but generally I was feeling almost well. It was as close to ‘well’ as I thought I could get anyway.
Anxiety and panic attacks
Devon made us all happier; less stressed, more relaxed, it would be hard to be stressed there really. But something else was happening to me. The panic attacks that I had been having for years were becoming more regular, I felt like the world was going to end, I couldn’t think straight, I was dizzy often, it felt hard to breathe, I was shaking way more than I should have been. A few visits to the doctor eventually diagnosed anxiety, and as it turns out I’d suffered with it for years but always put it down to depression. It made sense once I understood the difference. More pills. Now I was on, and still am taking, 6 different medications, 7 pills in the evening, 6 in the morning. That’s before we add in all the supplements I have to take, and the regular injections I have to boost some of my levels.
At least I was starting to feel better and understand my own mental health needs.
Before I knew it, I was involved with community projects, working with the local authority, trustee of a small charity and a parent governor at Ben’s school. Then I was being filmed for news channels around the world to talk about Bens little blue cup , which quickly became the LittleBlueCup project and gave me something else to manage. It was great but I became too busy. My anxiety regularly gave me a hard time, I knew how to handle it, I had Diazepam for when it got really bad, and I was seen by the mental health crisis team after a particularly bad episode at Ben’s school when I completely lost it. I was well looked after.
Ayesha was finally diagnosed with autism after an 8 year battle. Autistic with learning disabilities and communication needs, and they had no idea how she was able to be left in mainstream schooling, considering she was several years behind her peers and not catching up. I had been right.
Coping with a crisis
In January 2018, our landlords served us with an eviction notice. We had nowhere to live, nowhere to move to, and very few options. This sent me spiraling rapidly out of control. I was a bit of a mess and needed a lot of support to hold it together. I won’t go into details, but our white knight came to our rescue and bought a house for us to rent from them that we would never be kicked out of and the children could count as their ‘forever home’. The only thing was, because of house prices, this forever home was 220 miles away in Mid Wales.
So, we moved to Wales, where we currently live. It’s been a very stressful move for one reason or another and I have had a few issues with my anxiety, but generally things have been good. We love it here, so quiet, so peaceful. The children are very happy in their special school, Sammi loves living here and is getting out and about more.
What I have learned
16 years it’s been. I have now lived with poor mental health for 16 years. I’m convinced I’ve always had mental health needs but was never noticed or picked up by anyone. I will continue to take my medication until a doctor is brave enough to try and wean me off of it. I will live with generalised anxiety disorder, it fights me, but I fight it back, and eventually I always win through. It’s about accepting and understanding and working with it. I am very open and outspoken about my mental health needs as I hope to reach out to other dads, male carers, men who need a bit of support, or their partners, family or friends who can see signs but don’t know what to do. I’m not an expert, I’m an advocate. I am here to talk about mental health in men and especially in men who have children with special needs. Those guys have it tough but too often try to play it cool. If that’s you, maybe we could chat…
If you would like to get in touch with Marc you can find him @GrumpyCarer
Huge thanks to Marc for sharing his personal story with us – if you would like to do the same please get in touch with us at firstname.lastname@example.org