Our chronic illness mascot turns 6!

Delores Consuela turns 6 years old!

Is it a proper birthday without a party hat?

My little miracle piglet is still trotting around like she owns the place with not a care in the world. She took that weeks-to-live prognosis we were given in late 2018 and she pee’d all over it. Chronic illness has never looked so cute.

My relationship with Delores is one of the best and most rewarding relationships I’ve ever had. It’s changed dramatically since 2018.

Delores wanted nothing to do with me for the first two years of our time together. She would sit still on my lap for all of thirty seconds at a time. She only had eyes for her sister, Popcorn. If Popcorn was out of sight, Delores would panic. She’d go so far as to do that incredibly rare guinea pig chirp (she also does it when it’s really dark so we think it’s her scared noise).

It was always Popcorn who rested and lay with me every day, not Delores. I tried to win her over with food – but even when she would eat out of our hands, she was never relaxed and always jumpy.

Popcorn heartbreakingly passed away in July 2018 and it seemed that I took over as key recipient of Delores’ affections.

Popcorn and Delores – the best guinea pig duo of all time

In December 2018 though, we were told we had very, very little time left with Delores. And we were left to prepare ourselves for saying goodbye, or making the decision to say goodbye when it was clear she needed to leave us. Since mid 2018 she’s had ovarian cysts & bladder stones & tumours & all-sorts going on in that tiny little body of hers. She’s been under anaesthetic several times (very risky for guinea pigs) and been operated on. (Yes she is the most expensive guinea pig of all time.)

Delores with ‘The Babies’, Juanita and Rowan who we got to keep her company.

They say healthy pigs can live to be 6-8. Well , Delores isn’t healthy and yet here she is! Popcorn was 3 when she died.

The trust she has for me now is my humbling. After her second operation in late 2018 she allowed me to hold her frail little body up on her hind legs while she cleaned herself; not being well enough to stand up by herself. It’s still one of my most treasured memories.

Out of the two of our original duo, Delores was always the most spirited – remember that day we lost her for hours only to find she’d climbed the stairs and was pottering about under the spare bed!

I can’t stress enough how fast she would run away if we so much as reached down to stroke her. We could never even touch her unless she was cornered in the pen.

Whereas now, Delores will come and sit beside me if I’m resting on the floor. She trots over when she hears the lid coming off her medication. She purrs! Now she waits at our feet to be picked up.

I’m so proud of her.

Happy 6th Birthday our little miracle piglet. My little da’ling.

Syndrome Syndrome Syndrome

Everyone’s favourite Fun Sponge is back with the same old message.

Because it’s important.

IMAGE: Text reads “Chronic Fatigue is a symptom. It is common in a whole host of illnesses. Cancer patients, MS patients, people with Parkinson’s, arthritis, Depression…they can all experience Chronic Fatigue. Chronic Fatigue Syndrome is not a symptom. The word Syndrome is important in making this differentiation, even if you dislike and disagree with the weak naming of the condition. Syndrome implies there are a group of symptoms that consistently occur together. Chronic Fatigue is one of them but it is only that: one symptom amongst a whole heap of others.”

Chronic Fatigue is the pits. So many people experience it as a symptom in so many different illnesses.

Chronic Fatigue Syndrome is also the pits. And it’s name is both rubbish and misleading. CFS is the name that’s been used over M.E by the majority of medical professionals since the 1990s. The consensus amongst the community it is that the label is poor, places all the emphasis on just one symptom, doesn’t translate into other languages well, and in no way does the illness any justice. Alas, it’s the label we have.

Chronic Fatigue and Chronic Fatigue Syndrome are not the same thing.

It’s vital that CFS and chronic fatigue are not banded together. I see it so often (more frustrating when it’s done by accounts with such a big following).

CFS/ME or ME/CFS is what a lot of us in the community use. But to see Chronic Fatigue/ME used? Nah. Don’t do that please. The label M.E. was replaced by Chronic Fatigue Syndrome. It wasn’t replaced by chronic fatigue.

(I have zero energy for the CFS isn’t M.E debate. Zero energy.)

Text reads “Chronic Fatigue/ME” with a large red cross next to it. Below the teapot reads “Chronic Fatigue Syndrome/ME” with a large green tick next to it.

Luck of the draw

I get asked what it was that enabled me to see progress* with my health.

Honestly? I think it boiled down to three things:

• Luck
• Privilege
• Circumstance

The conditions within which I became ill with M.E. were as favourable as they can ever be.

• I had just graduated from university ergo my education was unaffected by my illness. I didn’t have to attempt to study alongside my new health restrictions.

• I had never had my heart set on one career and had not yet entered full-time employment. So, although devastated that taking over the family business wasn’t ever going to happen for me now, I didn’t experience the loss that others have.

• I was living at home and so had no mortgage to think about or bills to keep on top of.

• I became ill with severe M.E. from the get go. So unlike many others, I didn’t have to face the impossible task of trying to hold down a job because the choice was made for me. There was no pushing through. I couldn’t lift my head off my pillow.

• I had no dependents and no responsibilities. No children. No pets. Only myself to think about.

• I had the full support of my family, particularly my mum.

• My mum’s advocacy and understanding of M.E.

• I was diagnosed alarmingly quickly and seen by a CFS/ME Clinic within six months of my first symptoms. The clinics aren’t great but I didn’t have years of waiting and wondering like the majority of people do.

My point is, be careful whose journey you compare yours to. Because the circumstances are likely to be very different from your own.

All that and I’m still not better than this?! Yeah, sorry about that.

Just go a little easier on yourselves, that’s all.

*Don’t mistake progress for recovery.