Ann talks about how the team at QEF supported her mental health as part of her rehabilitation, and ‘made her feel safe again’
Please note, this blog contains description of self harm.
“I was in hospital for 7 weeks after St. Georges hospital called saying I needed to come in for surgery, as I had a tumour on my spine. After an MRI showed the tumour was pressing on my spinal cord, it was decided surgery was too dangerous, and as the tumour was benign they decided not to operate.
I was sent to Kingston hospital where they said I needed rehab – I was in such a dark place and in so much pain, I was just crying all the time. Although I’d had the problem for about a year and half it was only when the OT was having a general chat with me and said ‘well obviously you know you won’t walk again’ that I realised what my situation was and it gave me a real shock. They thought I knew and looking back I probably was told before, but because I was in such a dark place I didn’t take it in. I just went to pieces after that.
The OT did some research and suggested QEF. I agreed to come for 2 weeks so as not to waste anyone’s time, but I was adamant I was going home – and here I am at least 12 weeks later! I couldn’t believe it when I came here; after hospital not to be on a ward and to have my own room and TV was fantastic. I don’t have to worry about a thing here, the facilities are just perfect and the grounds are lovely and it’s so peaceful. I wasn’t sure about ‘Alexa’ at first – I can’t sit in a room on my own and talk to something, but now I use it all the time. You can have the blinds down, the lights and TV on or off – it’s another step on the journey of independence, so I don’t have to ask someone to do it for me. I need the hoist as well, it takes 2 people to get me in and out of bed to the chair and in the shower.
They’ve totally got my pain under control here and I’ve had relaxation therapy as well – the clinical psychologists have been amazing. At first I wasn’t wanting anyone to help me, I felt my life was over because I was never going to walk again. I was constantly crying and I was self-harming – scratching both my arms, so I was ‘on watch’ meaning 15 minute checks day and night to make sure I was fine. I wasn’t really with it at the time to understand what was going on. I’ve never been a negative person in my whole life, so this was a horrible experience – you get so low and you just can’t lift up on your own. Psychology has been so important to me here, even down to hypnotherapy to help me get through a catheter replacement. Next time I’ll be able to close my eyes and do some of this relaxation myself.
I couldn’t move at all when I first got here, couldn’t roll over or sit up, so the team had to do everything for me. The physio team have been working with me on all sorts – massages to help my legs and feet, they’ve taught me how to roll over by holding both sides of the bed and they’ve also strengthened my arms, as they need to take the place of my legs.
Lucy, my support worker, has spent many an hour with me when I was at my lowest – and she’s helped me develop an interest in gardening. There’ll be lots of random parcels waiting for me when I get home, like flamingos for my garden. It’s something I’m going to be able to do – I’m just crossing the ‘dis’ out of disabled and I’m doing the things I am able to do, even though I might not have done before. I’ve been doing art here with the team and I’ve made a heart mosaic that is going in the garden when I get home, to remind me of my time here, as there is so much love going on.
When I was at home before, I was unable to walk so I had a hospital wheelchair, but it wouldn’t go through my doors at home, so I’d spent 13 months bed bound basically, as the only relief from the terrible pain I was in was lying flat. Whilst I’ve been here though my keyworker has been on to the council and they have widened the door to the garden for me and installed a wet room that I had been asking for over a year. Their professional intervention has been fabulous.
I’ve had Occupational Therapy too which varies a lot as I’m in groups now. I’ve done everything from baking to making candles – I’m not very creative so I’m not doing it very well, but I’ve enjoyed it. I can’t get in my kitchen at home as its too tiny, but they are getting me a table that goes on my wheelchair, so I can chop the veg and be part of preparing the meal with my husband.
I enjoy everything I do here to be honest and I’ve made friends with other people through the groups as well, even though many of them have gone home now. That’s a real change though, as at first I didn’t want to leave my room or meet people. I didn’t want to socialise with other disabled people, as I couldn’t accept that that was my life now and I didn’t want to face up to it. But they coaxed me out somehow.
Support from QEF’s Mobility Services team
The mobility team have also been over to assess my wheelchair as my one wasn’t comfortable or supportive anymore. They have leant me a QEF power wheelchair and shown me how to use it and I love it for the independence it gives me. I’m allowed out on my own now to practice driving it on the paths outside, all around the centre. I don’t drive at all so the paths have been very useful especially with practising my reversing. It feels great to be in control of something and getting my life back. I will need an assessment when I get home to get a similar chair hopefully.
A huge amount of support has got me back again, from all the staff – it’s so friendly. And I have such good banter with the ladies on the night shifts, it really lifts your spirits. A month ago my daughter visited and she said ‘I’ve got my mum back’ as all she’d seen was me in tears of pain for months.
QEF have given me my life back. I feel much happier and at peace with myself now. I’ve accepted that I won’t walk again and at least my arms work – some people don’t have that do they. That’s thanks to the most fabulous team here and I’m not just saying that, it’s true, they’ve made me feel safe.