It’s interesting, me and mum discussed this yesterday because I think up until recently, I had a lot of hope with it being this Long Covid but I would slowly improve, but now I’ve got different diagnosis such as PoTS (Postural tachycardia syndrome – an abnormal increase in heart rate that occurs after sitting up or standing) and EDS (Ehlers-Danlos syndromes are a group of rare inherited conditions that affect connective tissue) which are lifelong syndromes. My outlook has changed and I feel like it’s not, life sentence sounds really dramatic, but it’s a lifelong, they’re lifelong syndromes, so, although I kind get stronger, I hope, I’m gonna have to get used to this changed way of living but it was funny, mum said yesterday, quite a while over the last two years, I just wouldn't talk about the future and I found it really difficult to plan anything.

Sorry, can I clarify, did she say she wouldn't talk about the future or you wouldn’t talk about it.

I wouldn’t.

You wouldn’t.

I don’t talk about the future. I would shut down the conversation just because I was so fearful of what the future would bring and still am. I, I can’t imagine what my future will look like at the moment. I just try to take it day by day because I think I’m quite a logistical person and on a day-to-day basis, I still need lots of help and I know what the social services are like and I know what the council is like because I used to work with deaf people and deaf people that have additional disabilities. And I know how hard it is to get carers and things like that. And I obviously think it’s one thing relying on your family but having to have someone else come in is a completely different scenario to get my head around. Yeah, so at the moment, I’m taking it day-by-day, can’t really answer that one. I know where I live it would have to be ground floor [laughs] I know that much. And an adapted bathroom because it’s really difficult washing with the temperature and with standing. And career wise, I find that incredibly difficult to talk about because it took me ten years to become an interpreter. They say it takes a minimum of seven. And I’m not quite ready to admit or give up on the profession. But my cognitive dysfunction depends on how it does and not being able to process two languages at once. I have to really assess that at some point.

So, when I was acutely unwell my mum was physically caring for me and so she’d have to bathe me and wash me and wash my hair. Be cooked for—she did everything. As I’ve said, you got stronger. I can branch out independently like cut my hair shorter so that I can wash it and do it myself. And I use a shower, a bath board on the bath. So, I can sit. But when it comes to cooking and things like that, still really struggle because I can’t stand up either the hob, the heat and the standing for too long. I just get super dizzy. So, I can’t actually help much around the house. And going from running your own house to coming home and not having any involvement, I actually felt really guilty a lot of the time because I mean, I don’t, my own way, a young adult, but I can’t help around the house. And now that everybody is back to work, as it wasn’t when I was acutely unwell. It just feels really tough that, you know, it’s a busy household and I can’t do the things that I want to do to the point where I’m like my nephew will come home from school and I will get him something to eat, but he will quite often help. So, some days just lifting the kettle, I find it really hard. So, he will fill it up and put it back in place to make what I need hot water. And he’s become really helpful. But, I suppose he’s ten, it’d be good for him to learn things like that. But, at the same time, I should be able to do that for him. Yeah.

And my mum is really affected my mum. You know, she said she feels like she’s been grieving for me, even though I’m still here. I’ve also seen friends do that. Because it’s loss of the person that I was. And she didn't expect to see, you know, her 32-year-old coming home and caring for her and then seeing me in the wheelchair for the first time and now using a walking stick or the wheelchair. It’s all been a lot emotionally to process. So, it’s really impacted on my family as a whole. Yeah.

Yes, but he’s not very well, either. But I was able to support him actually within the last two years. I do a lot of his medical advocacy because he gets a lot of confusion. So, not only have I had to sort stuff out for myself, I’ve also been helping dad. I obviously just got him rehoused recently, which was huge amount of energy. But in a way, now that I know he’s in a safe environment, it’s a lot of weight off my shoulders because I was worried about him falling and nobody knowing that he’s fallen and so now he’s in a warden supported flat, locally. Yeah, but he’s very poorly himself. He’s waiting for a big operation on his spine and his hips. Yeah.

Are you able to visit him more or not?

So, it’s difficult to visit because I have to get a taxi there and a taxi back now. But we do see each other probably once a week or we speak every day. I’m very lucky that mum and dad still have a nice relationship. So, sometimes mum will have him over for dinner which is nice. We all just get together in our room. It’s quite easy. But he needs lots of help. I was always his [inaudible]. So, that’s been hard because I’ve still tried to do it while I’m unwell. My brothers don’t deal with things like that very well. I have asked them you need to step up because they can see I’m not well and I wasn’t coping very well.

I was unwell altogether for about seven weeks. In the seventh week I was starting to be able to walk around the house. Walked to the end of my path outside and back again. It had really taken it out of me. I was bed bound for most of that time. And I was living in a shared flat, but my family made a decision to move me home because it was up three flights of stairs and they didn't want me getting stuck there as my flatmates were keeping away from me, just in case it was Covid.

And yeah, January 2021 through to February I was covered in shingles all throughout my head. So, it was kind of like one thing after the other because my immune system was just so weak and I decided that, that Christmas that I’d have to give up my flat because I was getting stuck in the flat and unable to shop for myself, cook for myself. Get up and down the stairs and that was quite dangerous. So, it’s a really difficult decision because I tried that whole year for my flat. It’s like a light at the end of the tunnel to get to make the decision that I’d have to move back home ‘cos I needed their help.

So, we’ve been quite lucky that there’s a downstairs room here. I moved into the downstairs room. But adaptations have been added to the house such as, grab rails around, plotted around the house, especially in the toilets and the bathroom. We are waiting for the banister to be re-installed because we don’t have the main banister. We’ve just got one on the wall which is quite dangerous for me. So, things that mum has been very acceptant of being changed around the house. Yeah. And I would, there is a toilet down here, but not in the bathroom. So, that logistically is, is hard. I have to wait for somebody to be home in order to have a proper shower because I have falls. So, we’ve been very lucky that was a ground, ground floor bedroom. But it’s just a bedroom and then a toilet and sink [laughs]. Yeah, you just have to reshuffle too much.

So, when you say the, the room downstairs was already a bedroom, rather than you making it into a bedroom.

Yeah, it’s more storage. There was a bed in there, but it was more storage. So, a lot of that had to be moved. You know, how houses just accumulate a lot of stuff. So, all of that had to be moved and then all of my stuff moved back in and once I had my own kitchenware, things like that. So, that all kind of went into the loft in the storage for we hoped one day when I can be independent again. Yeah. It’s, it’s a small house, so I have to kind of move my whole life back in again and that was a big task.

And was it the house you’d left? I mean, did that mean you didn't go back to your bedroom as it were?

Yeah, so I had been down on the ground floor before moving. So, yeah, it just felt like, it wasn’t my childhood room. But it just felt the room stepped backwards because I had planned on, I was saving actively to try and get my own place and you don’t expect to kind of be put back into your childhood home all over again. And so, there was a lot of emotions attached to that. And then, not only moving home, but not being able to do anything for yourself as well yeah.

So, it’s really different and I’ve had to get my head around that and so has my mum and my cousins and my friends because the logistics is so different. And, of course, our car and things like that wasn’t suited to fit a big electric wheelchair in [laughs]. So, practically things have had to change.

Yeah, so we’ve been lucky that an OT fitted the adaptations around the house. But I still haven't been given a referral for a wheelchair services, so I pay for the wheelchair hire at the moment. I changed that for quite a while and now I’m on PIP, which has been a huge help because that money just goes directly to the chair. And without the chair, I was literally stuck in the house because I couldn't get out on my own. So, it’s created such independence. In regards to cars I’ve just given up my car. I couldn't get out of a contract, so I had to keep paying for it. I’m very lucky I’ve had savings ‘coz I was working full-time. It was the same with my flat, I couldn't get out of flat for so long as that had to be paid for even though I wasn’t there. So, a lot of my savings that I’d worked hard for has gone on living. I say living, but I’m not using these things the flat I wasn’t living in, a car that I can’t drive [laughs].

So, we’re lucky that my chair can fit in mum’s boot, but she can’t lift it herself. So, quite often, she flags down somebody along the street to help lift it. But now we’re looking at a hoist and but that will cost more money and getting their wheelchair in and out of the house, I can’t do that on my own. So, we’re waiting for an OT referral, but it got rejected. I don't know why. So, my brothers have started working on the path, a path into the house. But that’s costing us money ‘cos we had a porch and the whole hedge had to be dug up and that was a lot of work because you can imagine how long that’s been there, the roots. So, yeah, things like that we just had to get on with if I wanted to be able to get out of the house. And we’ve been very lucky that I have my own savings, otherwise I’m not sure how we would’ve done a lot of what we’ve done so far.