I think it might be, interesting for you to talk to people about like their relationships with, partners and maybe their like sex life because it can really affect you if you’re having a bad day, pain wise, emotionally, yeah, it’s a big thing for me, especially just at the moment it is anyway, so, but it really affects you.

Do you want to tell me a bit more about that, would you be okay with that?

So, I find it hard to start relationships because of my symptoms, so, well obviously with my HS, like I’m not very body confident. Also, with fibromyalgia, you’re tired a lot andI struggle to even stay [smiles] awake to like text someone or talk to on the phone, let alone like go out and meet them and have an active like relationship, like especially when you get into a relationship it’s nice to do things like go for a walk [shakes shoulders] or you know, go somewhere and it’s a proper struggle for me so, there’s that.

Then also, also there’s this, obviously the sexual side of things, it’s painful, if you’re in pain already you can’t [smiles], you can’t be like jumping [laughs] around everywhere because you just, you can’t, you physically can’t [smiles], so that could, that can affect things in, sort of just a rubbish way as well, so [smiles].

So how do you cope with this then, or how did you, did you find some ways around how to deal with this?

I was just, I was just open with my boyfriend about how, it’s all, it’s all very new [smiles] at the moment this, this relationship as well, so, but that started in January [laughs] as well, the, the same time I found out about fibromyalgia. So yeah, I just, I just explain like every day is like, what the pains, what my pains are feeling like without being super moany [smiles] and like depressed, I’ll just say like you know, just tell the truth, like explain, I explain to him how my shoulders feel [moves shoulders up and down] and stuff and you know, we had a good chat about that the other day, yeah, so.

I think he’s very aware, very conscious, of my lower half pains, especially when we’re [laughs] having sex, so, yeah. it’s, so you just have to be open and honest, and if they can’t deal with it then they can’t deal with so they’re not for you.

It has, it has come into my mind thinking like how would I manage pregnancy and how would I manage then having a newborn if like I am this tired, and how would a pregnancy affect like my body, so it has crossed [raises eyebrows] my mind definitely, but I don’t know too much information about it really. I haven’t looked into it in that sense, I haven’t [shrugs left shoulder], Googled anything or asked anyone about it, so.

Would be that something for example which could be something you might be interested to find out more at some stage?

Yeah, definitely.

I don’t really have, much of a support I’d say, in terms of people that understand what I’m going through apart from, some people that I’ve met on the internet [smiles]. So I do have a group of, women that I speak to regularly, that have HS and, some of them have fibro as well so it’s good to speak to people that have, have the same, issues that I have, because they understand more. I just don’t think anybody really understands if they don’t have it [smiles], so.

Can you tell me a bit about this group, of you know, women you, how did you get in contact with them and is it just online or, yeah?

Yeah, it is just online for the time being because obviously we can’t meet. But I started an Instagram page, for my HS when, just before Christmas I think and I, it was just really to probably make myself feel better at first but it’s sort of grown into this, page that I get in contact with, other people. We’re now, I’m now in this group of women that, one of the ladies is a, has a business that has to do with HS, because I have a job that’s beneficial for that, I help her out, we have another woman who’s been on TV with it who’s got quite a good following, and yeah, we have a really good sort of group. And yeah, it is online for the time being.

There is the one lady that lives near me actually, so we’ll probably meet up when we can [laughs], but obviously now it’s all online or on the phone [laughs].

What does it mean to you to have you know, this support?

Oh, it means so much [smiles] like because, well not, when, we’re quite positive with each other, we don’t, it’s not like a pity party of women with conditions [laughs] that we just like moan all day, we’re really good at like keeping our spirits up and you know, helping each other with information. Yeah, well if someone’s read, read like a journal or an article or something then we’ll pass it on or if someone’s heard of something, that helps we’ll pass on that information. it’s good, it is really good, positive, uplifting group of people.

So probably, getting in touch with me [smiles] rather than me getting in touch with them about my pain medication, so them keep, keeping track of it. I feel like sort of like they don’t even know that I’m on it [shakes head], so I could’ve just been on it for the, for the rest of my life and it not been followed up with. Yeah, I think that, that’s one thing that I’d prefer.

Another thing is you know, referring me to, to groups, local groups or other people that have it, or even setting up their own group of patients, that would be quite nice, something a bit more personal. Maybe just ringing to check in with me. Again, I know they’re really busy and I know that that’s probably the last thing on their mind, but it would be nice, it just would be nice [shrugs with left shoulder] if that could happen. Yeah, just really sort of managing it with me rather than me managing it and then being a sort of side part of it.

Yes, it’s, what’s the word that I’m looking for? Living with fibromyalgia is different from day to day, it surprises you in that one day you might feel normal and then the next day or three or five days you feel awful. So it’s, it really creeps up on you, and you know, one day you could be feeling great and then it hits you like when you’re washing up [laughs] and it just yeah, you just have a horrible flare. So, yeah, it’s sneaky, fibromyalgia.

So I was, actually diagnosed only in January, but before then I had had a couple of years of really struggling with my joints, which I’ve never had before. I’m quite active in that like I like to do activities, so I like to go for walks and I like to, go to the gym, but I was really, really struggling, with it.

I saw my doctor, my GP quite a few times because lupus actually runs in my family so I was aware of these types of symptoms and, and rheumatoid arthritis so I obviously got quite worried about it. But, he did a blood test, and nothing showed up. So it took a few times of me going to them and see them about the pains, and the symptoms that I was having, the fatigue and everything, for them to finally, refer me to a rheumatoid consult, an arthritis consultant, a rheumatology consultant, who noted down all my symptoms, spoke to me quite a bit and then said that they think that it’s fibromyalgia.

Well my, some family members have, lupus and, so they have arthritis. My nana is a retired nurse, she has rheumatoid arthritis from old age and, my auntie has rheumatoid arthritis and has a really, damaged hip. So I’ve spoken to them about these pains and spoken to them about their experiences and it just worried me because it’s kind of in my family already, the symptoms were similar, and I just wanted to make sure that it wasn’t the same sort of thing [laughs].