But so it felt a bit lonely in as much as I didn’t really have anyone to talk to. There’s support groups out there, and there still is an absolutely fantastic one in [city] under the name of [name], who provide complementary therapies and generally just somebody to talk to if absolutely necessary. But when you’re new to diagnosis, at least back when I was – I think it’s much better now – but when I was you basically got a whole bunch of pamphlets thrown at you and told you have MS, and told we’ll see you in six months for a check-up. And that kind of leaves you in a place that’s a bit of a limbo in as much as OK, I’ve got to read through all this and you just get information overload.

You know, you’ve just been told this dramatic piece of information that’s genuinely going to alter the rest of your life, and you don’t really have anyone that can fully appreciate what you’re going through. So I can speak to my dad, I can speak to my mum, I have a good relationship, I can speak to my wife. But at the same time they were dealing with the fact that I was diagnosed with MS. So my mother, being a nurse and nursing people with MS, she used to work in end-of-life care, so her view of MS is I’m going to be dead in six months. So she wasn’t a particularly great one to talk to because she got all emotional over it, while I’m not being emotional over it; I’m an incredibly factual person, I deal with things as they come, I don’t worry about things that I can’t change, so my MS doesn’t really worry me until I have to worry about it.

And my father is… Well he’s my father, he’s a man, he’s in his sixties, so he’s constantly in denial of everything that’s in front of him. He was under the anticipation that I would be dead before he’s dead, just because the only people he’s known with MS have had primary, severe primary progressive MS, and so all he’s seen with MS is death. From his perspective. So getting through to the pair of them made me feel more lonely because I was having to explain the basics of it to them rather than what I was feeling about it. I had to comfort them instead of them comforting me, which was a surprise in the process.

But so it felt a bit lonely in as much as I didn’t really have anyone to talk to. There’s support groups out there, and there still is an absolutely fantastic one in [city] under the name of [name], who provide complementary therapies and generally just somebody to talk to if absolutely necessary. But when you’re new to diagnosis, at least back when I was – I think it’s much better now – but when I was you basically got a whole bunch of pamphlets thrown at you and told you have MS, and told we’ll see you in six months for a check-up. And that kind of leaves you in a place that’s a bit of a limbo in as much as OK, I’ve got to read through all this and you just get information overload. You know, you’ve just been told this dramatic piece of information that’s genuinely going to alter the rest of your life, and you don’t really have anyone that can fully appreciate what you’re going through. So I can speak to my dad, I can speak to my mum, I have a good relationship, I can speak to my wife. But at the same time they were dealing with the fact that I was diagnosed with MS. So my mother, being a nurse and nursing people with MS, she used to work in end-of-life care, so her view of MS is I’m going to be dead in six months. So she wasn’t a particularly great one to talk to because she got all emotional over it, while I’m not being emotional over it; I’m an incredibly factual person, I deal with things as they come, I don’t worry about things that I can’t change, so my MS doesn’t really worry me until I have to worry about it. And my father is… Well he’s my father, he’s a man, he’s in his sixties, so he’s constantly in denial of everything that’s in front of him. He was under the anticipation that I would be dead before he’s dead, just because the only people he’s known with MS have had primary, severe primary progressive MS, and so all he’s seen with MS is death. From his perspective. So getting through to the pair of them made me feel more lonely because I was having to explain the basics of it to them rather than what I was feeling about it. I had to comfort them instead of them comforting me, which was a surprise in the process.

However I don’t know if it’s the entirety of [country], but at least there’s a few centres, one through in [town] – the [name] centre I want to say, but I may be wrong in that – that now has when you’re diagnosed with MS, it’s a bit like cancer care. You get a counsellor to talk you through it, what to expect, what changes need to be made if any. Which I think would have been a much better scenario, but that’s not what I got. I just got pamphlets, which I will attest to this day I did not read a single one of them, because looking at all of them just gave me information overload. Which I didn’t know what one did I read first and if I read the wrong one first is that going to make it worse? So it was easier just not to read them, so it was easier just to sort of hide it away and pretend it didn’t exist. To which point the diagnosis of MS itself was really lonely, so much so that I could talk to people but it was more I was comforting them than they were comforting me.

I don’t think the internet can ever really replace that. Video-calling helps a little, but there’s something unique about being in front of somebody and being able to… And it’s not just the conversation, it’s being in the presence of somebody is special. You can talk to people on the phone, you can talk to them through video but there’s just something missing in not having somebody there. I have no idea what it is, but there’s just something different about being in a social interaction with people. So they help in that respect of maybe not feeling the absolute loneliness, but I think there’s definitely times when a hug from somebody else is a big thing. In terms of helping loneliness. Obviously COVID has [inaudible] that as well. You can’t hug anyone.

I think you can fix loneliness, you can leave your own shell if you choose to do so, but it’s about choosing to change the way you are as well. Like one of the things I wanted to do before the pandemic kicked in was a hospital (ten minutes away from me) deals with a lot of elderly patients, so hip replacements, bone breakages, that type of thing as are more common in the elderly, and they have a whole ward for these elderly patients. And they obviously have visiting times for them et cetera, but some people don’t get visitors. As you can tell I can talk for Britain, I could talk about anything! I love old people, I love old stories, I love old memories, and as I always say, we only survive till the last person that remembers us. Talking to them, listening to them seemed like a good thing to do, so I had started the process of OK, yeah I can come in you know a couple of days a week and talk to elderly people, just chat to them and get the teas and coffees. Well, maybe not that because teas and coffees don’t really work with a wheelchair.

But you know I can talk to them, I can give them that social interaction, which they crave because they don’t really have it. Because people aren’t coming to visit and elderly people are obviously one of the loneliest groups of people… I don’t know why I went into that but… Yes, it changes people. Because of my experience of loneliness, I didn’t want other people to be lonely .In as much, loneliness doesn’t bother me as much I think as your average person; it’s kind of part and partial with being introverted in some ways. But at the same time, I don’t even though I’m not suffering as much, doesn’t mean other people aren’t suffering as much, and I don’t want other people to have to deal with loneliness. Because it is an awful thing, and it’s one of these things that if you get into the mental attitude where you can’t change it, then you’ll stick to that and you’ll just think there’s no way to change it, I can’t change my loneliness because of whatever reason somebody’s come up with. Sometimes it just takes a wee kick up the arse basically to go well you don’t have to be lonely, there are these facilities and these services, and you can do this and you can do that. You can go out, you can go sit in a coffee shop, let somebody sit in your seat, ask them how their day is. There are ways around it, and one of the easiest and what seemed to me the least energy-intensive way to do that, for me, was to go and listen to old people talk about stories of the war et cetera, you know. And get something from them as well as giving them something.

You don’t have to be lonely. I’d say that to somebody who’s in a level of chronically lonely that it’s a bit like depression in as much as it kind of appears inescapable, but it’s not. But it does require a little bit of energy, a little bit of a kick, kicking yourself up the backside in order to do something about it. Because unfortunately in life, nothing ever comes without putting in at least a fragment of effort. So I’d say that if you’re lonely, the help is out there, you just have to open the door to find it.