But the whole system doesn’t quite understand this thing. I mean, there are people, you know, teams, your teams and other teams trying to gain a better understanding to help us to help ourselves, and I suppose in the long run, that is what it will come down to. it’s getting enough information to help ourselves, because nobody truly understands what you go through on a day to day basis. I’m much more open with my family and they do understand. My husband and children, I, they have been a great support to me. I don’t think I would have been able to cope without them.

So, I was finally diagnosed in 2015 after a period of about 4-5 years, running to have lung function tests, MRIs, scans, injections here, there, bloods, week after week after week after week. All the tablets, Just take an aspirin I think my greatest tablet is my family. My family That’s it.

I don’t want to go down the road of taking 20 pills a day for pain because I want to know when it gets worse, so I don’t want to do myself any more damage. I feelI don’t even know how I feel. I feel upset that I am where I am. I’m 53, I’ve always been fit and healthy, I have four children ranging from 31 to 19, five grandchildren, the oldest one is 12, the youngest one is three, and I feel that I don’t have the energy to give them what I want to give them. I don’t have, you know, we go on holiday, we go on days out, and I’m the one that’s holding everybody back because I get so tired so quickly and I can’t walk for very long.

Before I was diagnosed in 2009/2010, I had these symptoms for many, many years previously, even my children were small, and you got up in the morning and it was struggling to get them dressed, never mind getting yourself dressed, and getting them to school.

It had a big impact on you know, their childhood, because their mum would be in pain and struggling and I’d be irritable, sometimes oh, you know, and you know, a short fuse because there’s so much pain and you’re not
Again, as well to play with them, to take them out places, that was a big impact, because you’re not, you’re just not, there’s so much pain and feeling you know rubbish basically, just you’re struggling to do things for yourself, to entertain them, to take them, it was a big chore to be able to take them places.

And as I say, with my kids it was, I felt sometimes that you know, wasn’t missed out but it was an effort, it took an awful lot of effort to be able to get out the door, to get them ready for school because you were so struggling, now I’m getting them ready. And then to go to school meetings or anything like that, and then I’d be forgetting things and again, trying to get my words out in these places, and it was very, I found that very, very hard because the kids, they were quite small when all these symptoms started.

And I think most of my really good friends kind of understand that now, that it’s not just I’ve opted out you know, I was the kind of leader of the gang, I was the one who organised the girls nights out, Let’s go away for the weekend, let’s do thi, and over the years your life just becomes smaller and smaller and smaller.

And then you have the guilt, because the guilt compounds everything because you can’t do these things, and you always, I’m making excuses for, No, I can’t do tha, and I’d love to come out for a coffee but you know, my back’s too sor, or. And all the time you’re tearing yourself to bits because, You shouldn’t feel like this because you look norma, you know.

it’s, that’s basically the thing, it’s so variable, that’s why, my friend’ll say to me, Oh, you want to come fishing say on Thursday I say, Oh, yes, fin, Thursday morning he turns up, No, not feelin, Oh, yo, I say, don’t star, it causes a lot of arguments you know, but there you go, that kind of thing, you cannot plan ahead.

My relationship, it affects that quite a lot. Sexual contact with someonehaving sex, it’s not difficult actually having sex, but the next day, you know, you’re actually exercising. So I’m not assuming it’s only sex, I’m assuming it’s every kind of exercise, like I said to you with the walking and my ankles getting sore, it’s exactly the same. And I imagine for a lot of people, I’ve read a lot on that Facebook site about that, about people and their partners or their husbands, because they don’t want to have sex so much because they hurt.

Yeah, that’s not a great thing. I’ve got to say that my partner is great, he doesn’t ever moan about it or groan about it, which is really good. But it is an absolute thought, what you’re going to feel like the next day if you have sex the night before, so I try and make it that I’ve not got work the next day.

That’s a terrible thing to say, but it’s true. It is true, and I can understand howI imagine both men and women, you know, they’ve got a partnership, they’ve had a loving relationship and then all of a sudden, that goes. It must be really difficult, really difficult. So that, yeah, that impacts a lot on my life there. Yeah, a lot.

it’s just, it just overwhelms your mind, there’s not a part of your life it doesn’t affect, from your interaction with people to your to your relationship with your partner, you know? It has an effect on that capacity, even within the relationship of a man and a wife because of the pain.

And so it impacts in the very personal parts of your own life, you know, and that presents a whole load of other problems and you’re left with the view of the partner feeling unloved or unwanted or, or not attractive, and so you’re then having to explain the situation, why that is for you, it’s not because that you’re no longer a man and she’s no longer a woman, it’s [laughs] this damn thing called fibromyalgia [laughs] that [smiles], you know, I can understand why people turn to alternative drugs. I don’t, I just stick to what I’m given legally, but I can understand why people do. I can understand why people, no doubt, have maybe taken their lives because of this pain.

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.

See, because I’ve tried to think about it, and I mean, maybe because I’ve not spent long enough on the forums or anything like that to be able to find, you know, to find the perfectthe perfect thing that helps, but I think it’s I think for me, the thing that I wanted the most support on was about how it’s affecting people within my age groups, so people that are starting out on their career journey, you know, are starting life with a family.

I mean, I said I’ve got a stepson but it’s something, you know, my husband and I are thinking about having a baby at some point, I’m thinking how on earth am I going to cope with you know my symptoms and having a baby as well, and keeping work andit’s sort of people that are really starting out on their life journey and having, you know, endless possibilities to then not having those for, you know, to then having to try and think about restricting possibilities and having an opportunity to discuss howI guess how people have learnt to adapt their life, to fit around it or sort of say, you know, I’ve also had experiences where I’ve been told I need to cut down or do less, this is how I’ve managed it.

I think the sessions as well were a bit moreI mean, it was helpful for, like, group feedback and sharing of common, you know, common ideas and common feelings, but again, I think becausebecause it’s my belief that fibro is such a unique condition for people, I think that having individual one-one tailored help would be better than having it in a group setting, because I think it gives that person the opportunity to specifically – you know, I could have sat there and gone, I really want to have a family but I’m worried about how pregnancy is going to affect my fibro.

And I’m sat in a group with people who are pre or post-menopausal that will be sitting there, going, Well, I’ve got grandkids,’ and I’m sitting there, going, you know, it’s not the same. Whereas I think having a one-one conversation means that I could sit and talk to someone and say, Look, I’m thinking about having a baby, I don’t know how I’m going to manage,’ and then they could say, Right, well, let’s look at you know, your life as a whole and discuss it in that way. So I think that’s where the major, the major, the major difference would be.

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.

Yeah, I think to a certain degree it did have a bearing on my family-planning as well, because I felt if I’m this disabled, why should I bring a child into the world that maybe I couldn’t look after or I would struggle to look after as well? And at that point I didn’t know if it was genetic or if there was any genetic connection. You know, was I going to pass it on, or whatever. And just as the years have went on, because the condition has got more and more complicated and harder to manage, you know, your body clock just ticks away and just the opportunity slips away.