My name is Kathy. I am relatively new to being an unpaid carer and it took me sometime before I even would call myself such and come to terms with this new chapter of our lives. My hubby was diagnosed with primary progressive multiple sclerosis in 2019, aged just 51, and around 6 months later the pandemic hit…
I have started writing a blog all about my journey, with a hope that it not only helps me, but also others who may be able to relate, as carers present or past. Hopefully it will be a help on some level, or at least a comfort other people on a similar journey.
My blog is on my Facebook page which is called ‘My blog’ (username Katunpaidcarer) if you wish to take a look. But extracts are shared here too.
(*Trigger warning – this blog post contains mentions of suicidal thoughts and self harm*)
Hello again… I would love to start this blog saying happy Easter, but in all honesty the season that brings much joy and family happiness was not like that for us.
Let’s just say mental health sucks at times. Thursday was not an easy day for me… more than I had thought, as it would have been my Mum’s birthday, the first since she died. I was able to journal some of my very mixed feelings and have a cry. Release mostly. Later I shared what I wrote with M and the children. M needed to go for oxygen therapy at the MS centre and he didn’t want me to be alone. So I tagged along.
While he was in I wandered around Warminster and, just wanting a peaceful place, I sat in a church on the high street for a while. To breathe, gather thoughts, journal and pray.
At lunchtime I met back up with M and his MS friend for lunch (which was nice). Little did I know his mental health was going down the pan again…
Anyone who suffers this disease, or one not far from it, will tell you fatigue and mental health are the two big things that they struggle with, even despite a realm of other things that can play.
Later that day, we went to pick up our son and we had tea with him and went to watch a film at the cinema, all enjoyable, and I suppose looking back, a distraction. Although M is constantly worrying about the money now.
Thursday night was awful. I was awoken at around 3am in the morning knowing straight away something was wrong. M was in a bad way, struggling to sleep again, not just the leg spasms and the fatigue cycle, it was the anxiety and worry for the future spiralling in his head.
From this anxiety, or should I say with it, his depression was coming into play… again. The black dog rearing its ugly head and him wanting to end it all was crossing his mind again. I do not want to go into detail here, but let’s just say a cry for help, and something I have never seen him do, self-harm. It was a shock for me, I knew he had been low lately but I thought going back to work (all be it part-time) would help and I did not realise it had got that bad again. We had experienced the black dog so bad in lockdown in our home (2020) and I remember how awful it was. I did not want this again.
I thanked him for being honest with me but wanted to beg him to never do it again. I knew this was always possible now and I asked him if it does happen, or he thinks he will do it again, to wake me first. But of course when you are in that place…
I sat and held his hand, then because we both believe I got the Bible up on my phone and read words over him, I prayed for him and shared a powerful song, all in the dark in the early hours. Then I lay with him and comforted him, my own heart breaking speaking positives over him.
Eventually he fell off to sleep and in the morning he rang 911 as it was Good Friday and the doctor was shut. They promised to call back, but the wait went on. Meanwhile I had a conversation with my son and he got in contact with our daughter, who is a nurse and was on shift but it was coming to a close. She flew up country straight from work, and was let off her next shift so she could be with him. (Incidentally, M rang again next day as they didn’t get back to him after promising they would, now under the mental health team).
My heart was so thankful when I realised, upon having her here. Our family came together when life was simply sh*t and we spent the day together, myself only popping out for a breather while I picked up some art from a small exhibition at the church. Which was lovely as I bumped into some familiar faces and friends and brief conversation and hugs were exchanged. But am all too aware I could not really express how it really feels to be in it, and how bad it had got. And the weather was lovely so the sun made me feel a little better too.
Later hubby went to rest (not sleep) on the bed, and R and I went for a walk together leaving my son with hubby. It was good to walk and talk and I realised I cannot carry it all alone. I too need to speak to the doc again. As much as I try to help myself and do things that are self-care to me, I can only do and afford so much, plus my running is right down again as I get over injury… so less of this is happening, although the odd walk and gym session is fitted here and there.
Now we await for Tuesday, M will ring the doc and see what happens from there. All of us have talked to him about counsellors, as his last experience was not good, right for him, he was put off for a while. But trying to encourage him to look again.
So that is where we are at. Each night I am praying and hoping for a better night for him, with no more episodes. Sleeping tablets give temporary help but are not a permanent fix. Without them, (he does not rely on them) he struggles so much at night. It is the most difficult time. Strategies are needed I think to help him cope… during the day he is simply ‘flat’ right now. And I feel emotionally exhausted.
If you need to speak to someone about your caring role and its impact on you, please contact us on 0800 181 4118.
If you need urgent mental health support:
- Go to your nearest A&E Department or call 999
- Visit your GP
- Call the NHS 111 service free from a landline or mobile on 111. Call 111 when you need medical help fast but it’s not a 999 emergency. Available 24 hours a day.
- Call Samaritans free on 116 123
- Call the SANE mental health charity national out-of-hours mental health helpline offering specialist emotional support, guidance and information to anyone affected by mental illness including family, friends and carers. They are open every day of the year from 4.30pm to 10.30pm on 0300 304 7000.
For non-urgent support with mental health, a free text messaging service provides mental health support to Wiltshire residents
If you live in Wiltshire and need somebody to talk to about your mental health or you are struggling to cope you can text WILTS to 85258 for free and confidential text message support that won’t appear on your bill.
Trained volunteers will listen and can help with anxiety and stress, depression or sadness, suicidal thoughts, self-harm, panic attacks, loneliness or isolation, abuse and bullying. The volunteers can provide you with tools to help you going forward and can point you in the right direction of other local support that can be accessed.