In­vis­i­ble trou­ble

Af­ter con­stantly feel­ing sick, Jac­que­line Wall, 28, from Wi­gan, won­dered whether she would ever get any an­swers about her mys­tery con­di­tion...

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Low­er­ing my­self into the bath, I sighed... Per­fect! Some well-earned, mummy-only time. The hot, bub­bly wa­ter washed over my aching body.

It was Septem­ber 2012, and I’d been in pain all day.

But with new­born Har­vey, and my Caitlin, one, to look af­ter, I’d learned to live with it. Re­lax­ing, I closed my eyes. Then my part­ner, Dar­ren, 28, bus­tled in, fuss­ing around.

‘Er, do you mind? I’m in the bath!’ I laughed. Dar­ren stopped in his tracks, star­ing at me. ‘What?’ I asked. ‘Jac... you’re yel­low!’ he said. What!? ‘Get out the bath – I’m tak­ing you to hospi­tal,’ he or­dered. Stunned, I did as he said. As I dried off, I caught a glimpse of my­self in the mir­ror. I was yel­low – all over! I’d been in and out of hospi­tal for years suf­fer­ing with sim­i­lar ex­cru­ci­at­ing pains, but I’d never changed colour be­fore. Leav­ing the kids with their grand­par­ents, Dar­ren drove me to Wi­gan Hospi­tal. The doc­tors rushed me off for blood tests and an ul­tra­sound. As the sono­g­ra­pher searched my ab­domen, she stopped. ‘You have a lump block­ing the bile duct,’ she said. They im­me­di­ately thought it was can­cer. Bile had backed up in my body, ex­plain­ing the weird colour of my skin. I was

trans­ferred to a Manch­ester hospi­tal for more spe­cialised tests.

Fur­ther blood tests showed my liver en­zyme lev­els were ex­tremely high. A bad sign. Doc­tors said they would have to re­move the lump im­me­di­ately, and test it for can­cer.

Dar­ren clutched my hand as the news sank in.

Be­fore I knew it, I’d been wheeled into the­atre, where sur­geons re­moved the lump.

But, as I was re­cov­er­ing in hospi­tal, they broke the bad news.

‘It looks like can­cer. Your body is shut­ting down,’ the spe­cial­ist said. I sat there, speech­less. I was only 22, with two lit­tle ones at home who needed me. My time in hospi­tal was a blur. I needed more tests to con­firm it was can­cer.

I had pain treat­ment, stent op­er­a­tions, and biop­sies, while Dar­ren split him­self be­tween

hospi­tal and home.

Friends and fam­ily helped with the kids.

Six weeks on, the doc­tors dropped an­other bomb­shell.

Fur­ther tests had shown I didn’t have can­cer af­ter all. I was re­lieved, but so con­fused. Why was I still so sick? The doc­tors were baf­fled, but said I could go home as long as I came in reg­u­larly for tests.

A year passed, and I even started to feel bet­ter.

Un­til, one morn­ing in Fe­bru­ary 2015, I woke up yel­low again.

The doc­tors checked for an­other lump at once – noth­ing.

More tests, scans, and prob­ing awaited me.

‘I just want to know what’s wrong,’ I sobbed to Dar­ren. Fi­nally, that April... ‘You have nu­mer­ous

au­toim­mune dis­eases,’ the doc­tor ex­plained.

He said that the orig­i­nal lump a year be­fore had de­vel­oped due to au­toim­mune pan­cre­ati­tis.

Then one thing af­ter an­other was flagged up – bil­iary and liver dis­ease, os­teo­poro­sis, rheuma­toid arthri­tis, and Bric dis­ease, a very rare liver dis­ease which had made the poi­son in my bile turn me yel­low.

Six dis­eases – and count­ing!

I was re­lieved I wasn’t dy­ing, but filled with dread, too.

I’d al­ways known some­thing was wrong, but never imag­ined it’d be this bad.

My doc­tor called them all in­vis­i­ble ill­nesses.

It ex­plained so much – in­clud­ing the pain and ex­haus­tion.

I faced a life-long bat­tle with the hor­ri­ble-sound­ing ill­nesses, and

po­ten­tially faced even more of them.

Most were in­cur­able. The doc­tors had no idea what caused my con­di­tion,.

At first, I was an­gry – it just felt so un­fair. But, slowly, I learned to cope. I have good days and bad and still have con­stant pain in my stom­ach, or spine, and all my joints.

I take 10 dif­fer­ent tablets, some twice a day and oth­ers as many as six times a day.

I’m still off work, but I’m hop­ing to go back as soon as I can.

Dar­ren’s been my rock, help­ing with Caitlin, now six, and Har­vey, five, when the pain gets too much. I’ve set up a Face­book sup­port group called Our In­vis­i­ble Ill­nesses – Au­toim­mune Dis­ease and Me, to help oth­ers like me.

Know­ing what’s wrong is half the bat­tle.

If I can help some­one avoid my suf­fer­ing, it’ll make it all worth it.

It felt re­ally un­fair

The symp­toms kept com­ing

Dar­ren has been amaz­ing

I even turned bright yel­low

Des­per­ate to be a healthy mum

Now I’m help­ing oth­ers

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