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'It robs you of your very being': Life with the invisible illness

Jo Allen has a chronic pain condition and has been getting some relief from cannabis-derived medicine.

BUT YOU DON’T look sick.

This phrase is something Jo Allen hears a lot, as do many people with fibromyalgia. People with the condition often look completely healthy, but are in near-constant pain.

Fibromyalgia is a chronic pain condition that has a broad spectrum of related symptoms including fatigue, cognitive dysfunction and reduced physical function. Its nickname is ‘the invisible illness’.

Source: TheJournal.ie/YouTube

Video: Nicky Ryan/TheJournal.ie


The number of people who suffer from fibromyalgia in Ireland is not known but more than 10 million people in Europe have been diagnosed with it. The HSE notes that about one in 20 people are affected by the condition globally. It’s more common among women than men.

As fibromyalgia has symptoms that could be put down to other issues, it is often misdiagnosed. Its exact cause is unknown and treatment for it can include various types of medication, including painkillers and antidepressants.

“There are actually so many symptoms that fall under fibromyalgia, I feel like you kind of go into your own shell a bit because you feel like you’re always complaining.

“People do doubt you because people think, ‘Well, that can’t possibly all be true, you can’t possibly have all that wrong with you’ and you start to doubt yourself, you’re like, ‘Oh my God, am I actually making it up?’,” Jo says.

She developed the condition while pregnant with her son Sam, who turned three in January. The condition worsened over time and forced her to give up her job as a nurse last year.

“I had a horrible pregnancy, I had a thing called symphysis pubis dysfunction so I had a massive amount of pain around my pelvis and my hip joints … My pregnancy was full of pain, I ended up in a wheelchair.”

For Orla 10 Jo's partner Brian and son Sam Source: Nicky Ryan/TheJournal.ie

Jo (42) says she was on “numerous” medications by the end of her pregnancy, something she felt “huge” guilt over.

Jo and her partner Brian Phelan (44), who live in Blessington in Co Wicklow, had dealt with two miscarriages and were delighted when their healthy baby boy arrived. (You might remember them from the ‘comment baby’ story in 2014.)

Unfortunately, this also marked a turning point for the worse for Jo’s health.

Having to give up work

“I went crashing into postnatal depression, luckily Sam ended up with no ill effects,” she recalls.

“I went back to work very quickly, [after] three months, because I’d used up my maternity benefit, I was an agency nurse.”

Jo says working 12-hour days took its toll, adding: “I put the fatigue down to being a new mum and the long days and then it reached a point where I was like, ‘No, I should actually be starting to feel a bit better now’.”

Her GP referred her to a rheumatology consultant, who Jo says diagnosed her with fibromyalgia straight away.

“I paid to see him privately … Then I started to get worse and I couldn’t afford to go and see him anymore so at that point I kind of started to fall through the cracks.

“I had to go back to my GP and get referred to a public rheumatology pain specialist … and of course you’re looking at a year’s wait, and during this time I just got worse and worse and worse.”

For Orla 70 Jo Allen Source: Nicky Ryan/TheJournal.ie

Jo had to start reducing her work hours before giving up her job altogether last year.

“I had to do my last shift, it was actually last Easter Monday … so it’s more or less a year now.

I had to stop nursing at that point because of pains in my wrists and I wasn’t able to do CPR anymore … I couldn’t do a 12-hour shift. I was having to stay in bed all day the day before and then in bed all day the day after just to do one day in work and it was destroying me.

As well as suffering from chronic pain, fatigue and cognitive issues, such as memory loss and struggling to find words, Jo also suffers from allodynia, meaning things that shouldn’t cause pain actually hurt her such as being hugged or wearing certain clothes.

My skin is extremely painful, sore to touch. It’s like a full-body sunburn, so I can’t even get a cuddle from Brian or Sam without pain.

Jo was bedbound from October to December 2016 and spent three weeks at Our Lady’s Hospice in Harold’s Cross, where she received hydrotherapy and other treatments.

Hardship grant 

A specialist has recommended she try nabilone and low dose naltrexone (LDN).

Nabilone is a synthetic form of tetrahydrocannabinol (THC), an ingredient found in cannabis, used for pain relief.

The HSE previously paid for the drug but stopped when the cost trebled from €400 a month to €1,200. Both drugs have helped people with chronic pain, as well as some cancer and multiple sclerosis (MS) patients, but more research in this area is needed.

Jo cannot afford the medications so applied to get them under the hardship scheme, which enables people who are prescribed items not covered by the medical card or Drugs Payment Scheme to apply for funding, but was unsuccessful.

For Orla 600 Brian, Sam and Jo Source: Nicky Ryan/TheJournal.ie

In 2016, it was announced that fibromyalgia would be recognised as a long-term condition by health professionals in Northern Ireland.

A spokesperson for the Department of Health told TheJournal.ie there are “no plans to extend the list of conditions covered by the [long-term illness] scheme” here. Fibromyaglia campaigners have been calling for this to happen for years.

Brian is now a full-time carer for Jo. The couple is receiving disability benefits but Brian has been unable to get carer’s allowance. He also suffers from chronic pain and was forced to give up work after injuring his neck while training with the fire service a few years ago.

“We’re a right pair,” Jo notes.

Struggling to look after Sam

“It’s hard for [Brian] because he’s in a lot of pain but he sees me struggling, and the fact that he can walk and he can do certain stuff and I can’t, he’s the one that has to then pick up the slack as it were.

“He does everything, he gets up to Sam in the morning because I literally cannot move first thing in the morning. I wake up at six o’clock just to take medications so that I can get out of bed to go to the bathroom.

I try not to let it upset me because if I think too much about it, it actually is heartbreaking that I can’t do that, I can’t look after him. I can just about mind him for an hour or two and that will leave me in so much pain that it takes me to bed.

“I had to mind him [at the weekend] – it sounds awful having to say that, he’s my child – but I have to say it like ‘I had to mind him’ because it is such a big deal for me to look after my own son for a day.”

CBD oil

Jo has got some pain relief in recent months from CBD oil, which comes from a non-psychoactive compound found in cannabis.

She puts drops of the oil under her tongue three times a day and also uses a vape pen, saying it’s “the only thing that I found that works for my pain, especially my hip pain”.

Source: TheJournal.ie/YouTube

Video: Nicky Ryan/TheJournal.ie

“I can take that and within about 20 minutes I’ll know whether I’ve got to reach for the morphine-based drug or not and a lot of the time I actually don’t have to go for that which is huge to me.”

To look after my own son for a day means that I am completely out of action for at least a day. In bed, in agony, having to take all of the CBD I have, all of the morphine derivative medications that I have, anything that I can get my hands on, just to get through a day after looking after my son.

Jo’s parents buy her CBD oil.

“I’d be lost without them because it’s not cheap … I’d be lost without that because, like I say, opiates and other medications have a massive effect on your system and I know that as a nurse.

“I tried so long and so hard to not go on to opiates because I knew that as soon as you get on to them that you end up just needing more and more and more. It’s something you see all the time in work and I didn’t want that for myself.

“You know, I’m only in my early 40s, I didn’t want to be someone needing more and more morphine-based drugs so I tried and I tried and I tried, but Brian will tell you I was just in agony. I was crying in agony, I couldn’t walk.”

Wheelchair

Jo often has to use a wheelchair or rollator to get from A to B as walking can be very difficult.

Chair 2 Jo's rollator Source: Nicky Ryan/TheJournal.ie

“I actually hate using [the rollator] but it means I don’t have to get into the wheelchair, but it’s really embarrassing – the amount of looks that you get because you don’t look sick … People are used to seeing little old ladies with the rollator, but with it I don’t have to necessarily get into the wheelchair, I can sit down every few steps to take a break.

“If I want to go anything further than the playground that you saw around the corner, then it’s the wheelchair. I can’t even go to the shops [without it]. I can’t remember last time I went to my local Aldi because I can’t walk around the shops, it’s too painful.”

Chronic pain 

A Health Products Regulatory Authority (HPRA) report recommended in February that medicinal cannabis be made available to people with certain medical conditions, namely:

  • spasticity associated with multiple sclerosis (MS)
  • nausea and vomiting associated with chemotherapy
  • severe, treatment-resistant epilepsy

Chronic pain was not included on the list, something that upset Jo as she believes thousands of people with chronic pain conditions in Ireland could benefit from medicinal marijuana.

“I’m very passionate about CBD … It’s something that the world needs access to, which is why I got so upset with chronic pain being missed off the bill there recently because there’s so many of us that don’t want to use opiates, we want to have a natural alternative to that.

“I’m actually convinced that part of my cognitive decline is actually as a result of one of the tablets I’ve been taking so I’m desperate to get off that because I struggle to find my words. I’m actually doing quite well [today], I’m quite impressed with myself.”

vape new Jo's vape pen Source: Nicky Ryan/TheJournal.ie

Speaking about the HPRA report in the Dáil recently, Health Minister Simon Harris said: “Patients accessing cannabis through the programme will be under the care of a medical consultant.

“The HPRA report did not recommend the inclusion of chronic pain and spasticity from cerebral palsy conditions for cannabis-based treatments in the access programme.

“However, this position will be kept under review, and if better clinical evidence becomes available in future, the inclusion of these conditions can be reconsidered.”

‘Swallowing your pride’

Jo says she initially struggled with applying for disability benefits.

“Part of the struggle to get it was within my head too because I didn’t want to admit defeat and had to kind of get over this mental hurdle of admitting disability, but in the end I reached a point I was like, ‘Okay Jo, you’ve got to face facts here, you know you need to do what’s best for this family’.

“So I sent in all of my proof and that and got my disability [allowance] without having to appeal or anything, which is quite huge apparently.

“But of course Brian sent in for carer’s allowance and got refused because I’m not sick enough, which is farcical because I can’t look after myself, I can’t look after our child. He can’t go to work because it’s just not a safe environment. You’ve seen how active [Sam] is, I can’t handle that for a couple of hours let alone a working day.”

Brian says the family had a “system” in place before Jo had to give up her job, recalling: “When she came home from work we’d get out of the house and let her sleep for a couple of hours and get some rest. We were functioning as a team.

Then it went downhill so quickly, very quickly. Once a few things kicked in – when you started complaining about the lights in the hospital, then the car journey was terrible for you, then you couldn’t turn the steering wheel, then you had to stop working altogether.

“I was out of the house to let Jo sleep as much as possible and rest, to keep the noise level down, plus keep Sam as active of possible and let him grow up as a child.”

Brian has arranged a number of events to raise awareness of and money for fibromyalgia.

“I’ve found that a lot – and I suffer with chronic pain myself – that you’re isolated, you’re absolutely totally isolated and no one wants to know you if you’re talking negative things and that you’re in pain and stuff like that.

If you talk positively, and yeah okay you’re wearing a mask, but it does lift you slightly and it lifts others a lot more … you’re trying to move forward rather than slip back.

Jo says the couple can’t afford childcare and often struggle to make ends meet.

cbd oil Jo's CBD oil Source: Nicky Ryan/TheJournal.ie

“Week to week we run out of money so that’s why I wouldn’t be able to afford the [CBD oil] if it wasn’t for my family.

“We can barely afford food so we’re lucky that we’ve had people raise money for us.”

Jo says the family is also very grateful to St Vincent de Paul, noting: “They’ve been amazing, we’ve got gifts at Christmas and they come around and give us food and stuff like that … You have to put your pride away that’s for sure.”

Losing confidence

Fibromyalgia has changed Jo’s life in many ways. Aside from the physical impact, the condition has also taken its toll on her mental health.

I used to be confident … it robs you of your very being really, beyond the pain and the cognitive impairment and all of that, it takes away who you are.

Jo says her stay at the hospice helped her become more comfortable with talking about her condition as part of her treatment involved advice for dealing with stress.

“Before I went in there I wouldn’t have been able to have this conversation with you without being in tears so I’ve actually come a long way to realise that this is not my fault, this is just the way it is and there’s nothing I can do about it and I’ve nothing to feel guilty for. This is just life now.

“We’re trying to get awareness out there because I know I’m not the only person who is affected by this illness and others like it.

“It’s not just about me, it’s about so many other people who perhaps don’t have a voice and aren’t getting in touch with people and trying to spread the word, really that’s why I’ve been trying to be a bit more vocal about it, just because I can.”

Jo has been writing about her experience on the Invisibility Hurts blog, she is raising money hereMore information about fibromyalgia can be found on FibroIreland.com.

Read: ‘There’s never a minute in the day I don’t feel pain’

Read: Ireland moves one step closer to allowing doctors prescribe medicinal cannabis

Read: ‘It’s like someone beating you up’: The invisible illness no one’s talking about

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About the author:

Órla Ryan

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