Jacqueline

Age at interview: 53

Age at diagnosis: 33

Brief Outline:

After experiencing pain for four years, Jacqueline was diagnosed with fibromyalgia by a rheumatologist around 2000. She is active in a local support group that tries to support those living with fibromyalgia and educate others about the condition.

Background:

Jacqueline is 53, married and the mother of two adult children. She is retired. Ethnicity: White Irish

More about me...

Jacqueline started to experience problems with her knees and her balance in 1996. At this time, she was recovering from glandular fever and was also suffering with numbness, migraines, eye problems, muscle weakness, fatigue and sleep problems. Around four years later, a rheumatologist diagnosed her with fibromyalgia. He referred Jacqueline to the pain clinic and recommended a morphine patch for the pain which has helped a lot. At the time of her diagnosis Jacqueline describes being “…in denial…I just didn’t want to believe it”. Around 2010, she had a very bad fall which resulted in surgery and things started to go “downhill” from there.

For around 14 years, Jacqueline has been accessing holistic treatments from a practitioner who offers shiatsu, pressure point therapy, and reflexology. Her family supports Jacqueline to pay for the private treatments which she finds very helpful. She feels that she would really struggle to manage without them. Being unable to access the treatments during the Covid-19 pandemic, Jacqueline feels her symptoms have worsened as a result.

Jacqueline describes her relationships with her GPs as being “absolutely terrific”, referring to them as “fibro friendly”. However, she has had other interactions with health professionals in the past where she has found them less interested and feels sometimes it is as if they try to “diminish your symptoms”. Jacqueline had to wait several years to get some helpful home adaptations (for example, handrails, walk in shower with a seat, and ramps) because she was informed in the past that fibromyalgia wasn’t considered a disability.

Fibromyalgia has impacted Jacqueline’s life in many ways, such as needing to give up work. Jacqueline also feels that she and her children missed out a lot on family activities in the past. However, she feels “lucky” about having strong family support. Although Jacqueline gets frustrated that she can’t do more around the house because of her symptoms, she gets some comfort in being able to organise online grocery deliveries for her family.

Jacqueline received life-changing support from a local support group in the past. For years now, she has been active herself within the group that tries to support those living with fibromyalgia and helps to educate others including health professionals about the condition.

Jacqueline’s advice to other people with fibromyalgia would be “Accept it and take help from the family”.

Jacqueline describes her problems as starting around the time she was recovering from glandular fever.

Okay. 1996 I started with problems with my knees and I was going off balance, very, very clumsy, letting things fall, I didn’t know what was going on with me. And prior just to that I should’ve said that I was recovering from, glandular fever and I was very, very sick with that, and this, the, the, the numbness, there was numbness, there was the migraine, distortion in the eyes without the pain in the head, I had muscle, very, very muscle, muscle weakness, and it just was not clearing, terrible, terrible fatigue. And when I would try to sleep I couldn’t sleep and that was very, very distressing because I had two young kids to look after.

Jacqueline has had a disability extension built in her bathroom.

I actually use a wheelchair and crutches at the moment, because there’s a big issue here with the muscle wasting, it’s really bad.

Well the OTs, they’ve built on an extension for me, disability extension so I could get into the shower and extended the whole bathroom, they done that for me there about five years ago.

All mobility and handrails and beautiful lovely walk in shower, and a wee seat as well, which is good security you know, when I fall, grab rails, ramps, a wee ramp at the front, one at the back. Oh, it’s great like, it really is great.

The only thing is where I live the bathroom would’ve been closer, but because it’s bigger you know what I mean, and I went out the other way, but it’s absolutely brilliant yeah, it’s really, really good.

Jacqueline says that because fibromyalgia is not always recognised as a disability, it can be hard for some people to access financial support.

Fibromyalgia was actually named as a disability by, chief medical officer Michael, Michael O’Brien I think you called him. And another thing again, people do be in a tizzy, and I will be in a tizzy concerning, benefits. That’s another real issue. I done, training with Disability Action, and fibro will be one of the top, clauses or, where you have the people, the department for community say, and that would be DWP, will actually, when they see fibromyalgia they just, “No”, that’s it, put a zero on it and that’s it. That can’t be happening and it’s still happening.

Right, with, right, the benefits, say somebody’s PIPs or DLA, whatever they’re on, and ESA, that will be, employment and support allowance as well, when people, right, you apply for, you apply you’re going to go on it and, when you’re out of work and if they say, “Is your condition going to be like this for more than three months you’re entitled to this, please apply”, so you go ahead and you apply for both, and you apply for income support as well, if you get income support, if your partner’s working it’s, makes a difference, you don’t get that.

So if for instance you had a doctor, if he didn’t believe in fibromyalgia and you have to take the form into him and get him to sign and write in his wee bit, and the panic and the stress that they sufferer of fibromyalgia has is unbelievable, it is shocking. There’s some will not apply for benefits because of the GP’s attitude. Now when they go on to benefits it doesn’t mean that it’s anywhere near your wage what you took in, it’s nothing to it.

Jacqueline’s support group hosts meetings where health care professionals attend – “it’s us that’s educating them you know.”

The wee support group I was talking to you about there, I think it’s come back to me, we all had fibro, admin, the whole lot of us and we’re getting it very, very hard to keep it together, so we put a request out to see what family members that understand it, fibro, I don’t think there’s anybody out there can understand it unless they’ve actually gone through it, but have family experience of it. So we got six, seven on board and the wee group is running now and helping so many, and also helping the health service as well you know.

So that would be why we would be educating the OTs and they come along to the monthly meeting now, the, fibro is a disability and, they come to the monthly meetings, not every, not every monthly meeting, we’ll invite them and then we’ll invite the consultants, the GPs, the nurses, support workers, right across the whole field we will, we will you know, it’s us that’s educating them you know.

And with the support group, how did you find out about the support group?

I found out about on, in the local paper, and, it was started up from a girl who god, had ME and fibro, and she had to give up her career, she had to give up with two doctors in it as well, that had to give up their practice, and I just went out, I just felt as if, and the type as well “If you don’t feel like getting dressed come in your pyjamas and come with your quilt”, and that’s exactly what happened, there’s that many sick people there you know, and quite unusual, and I just looked around and I goes, “My god, something has to be done here, something has to be done”.

So that was my first, now I don’t go out every week, in fact it’s been quite a while from I was out because we have it online and you can watch it online you know, but it, the amount, like it’s gone from, from 220 to 1,700 members of people, and you see all this about, you’re constantly seeing this about, “Doctors want me to get out”, doctor that wouldn’t accept fibro, doctor this, it’s terrible, it’s absolutely terrible you know, it shouldn’t be happening.

And how do you feel about this support you know, from your group?

Absolutely fantastic. I think it is absolutely brilliant and I’d be a very, very dark place without it.

Jacqueline thinks people with fibromyalgia need a specialist clinic – it could have complementary therapies all in one co-ordinated place, where people understand you.

A specialist, clinic, and that clinic would involve a specialised nurse and consultant from the onset of having the symptoms to the diagnostics, and then that clinic, this is what we’re fighting for at the minute, that clinic would continue to help those that we get in the support group that we could send them to.

I think fibromyalgia is around too long now that we haven’t got a specialist clinic; we should’ve had it.

The treatment, the fact that you’re sitting talking to somebody that understands what you’re going through, understands that you’re talking and you’re not making sense, understands the fog, understands it all would be so, so helpful to fibromyalgia sufferers.

And where would you, think is that best based, say in primary care, at the hospital or somewhere else?

I would say the hospitals, yeah.

Yes, the reason why I’m saying that will be because when you go to a GP, and I’m not, now I’m not talking about myself, you have like a 15 minute slot, which isn’t enough. So if you go up to a clinic you would have maybe two to three people, and you would have more time to explain and whether new symptoms or whether you’re getting worse or maybe you, you’re in a fog, that the, it’s dedicated to fibromyalgia you know, and I would also bring in, and I think it would be fibro, to the, with anybody with fibromyalgia to bring in, the holistic view, and that’s very important.

So what would be that encompass or include, like holistic view what, what do you have, for ideas for that?

Right, I would say, definitely, the physio department would probably be the best to do this would be, they wouldn’t need that much training, the pressure point therapy, shiatsu, reflexology and what did you call that one I was talking earlier about, put the needles in?

Oh, acupuncture.

Acupuncture, yeah, yeah, and massage, and like they have all the training for that really, like it’s just a matter, that will be the best, the best in my view to provide that treatment, the holistic care would be the physio department. But then again, it would have to be dedicated to fibromyalgia.