Too sick for chocolate..

Even my profoundly disabled daughter looked very concerned yesterday when she saw my puffy eyes and red nose as¬†I struggled to get her up and dressed. I’m not feeling well, and looking worse. But of course it’s only a bad head cold, it can’t be flu because I’m out of bed ūü§Ē

But then I have to get out of bed, because even if I hadn’t cancelled B’s morning’s carer, I would still have been on duty for the hoisting. Health and safety rules mean that two people are required to operate a hoist – apart from family carers who are expected to manage on their own. There are no guidelines about our working conditions.

I didn’t do a great job yesterday morning: B had to skip her shower, and went to her day programme with no AFOS (her leg splints) and her hair in a (very) messy bun.

The day passed in a blur – thanks to streaming eyes and nose, and I tried to rest in between the hot drinks and smoothies, which was all I could manage: I didn’t even fancy chocolate!

I haven’t been sick for a while, and the sitting down time got me thinking about the perverse situation of family carers who get ill. The State currently seems to treat the support of disabled people as a private matter, and that extends to their carers too, who are expected to have support network who can step in to help out at a moment’s notice. Really? When most families are struggling with high mortgages, long commutes, expensive and hard to find childcare, supporting elderly parents, increasing amounts of household administration and maintenance, and more?

I do have people who I can call on in an emergency, but a head cold doesn’t really qualify. My biggest worry is how I’m going to entertain my darling disabled daughter for the next two days. She loves to get out, and tonight B and I should be going to another very special birthday party that we’ve been looking forward to all year. But will I frighten the public and the party goers?

So what should family carers do if they get sick?

If I wasn’t a lone parent, or had local family support, perhaps I could’ve stayed in bed so my young adults won’t get my germs. (In my case that would be the spare room as I sleep in my disabled daughter’s room now.)

If there was emergency home respite and two care workers could visit when a family carer falls ill, then perhaps I could have taken a proper break.

When I was still in paid employment, the policy was to encourage all employees to stay at home when they were sick to avoid infecting others. For family carers, we have to tell the healthy care workers to stay at home so we don’t infect them. So when sick, we have to do more.

What happens to family carers who become completely incapacitated through illness, injury or surgery? I’m not sure, though I still have a letter from the health service promising this family round the clock support. Would it actually happen? I don’t know.

What happens to the disabled people in the care of family carers who have a health crisis at home? Especially people like my daughter who cannot call for help, leave the house or do anything to meet her basic daily needs? As I said before, if I am to care for my daughter for the rest of my life, safeguards need to be put in place. Something like a twice daily check in system to make sure that she is okay.

On a more positive note, I have been feeling grateful once again that I can escape from the house most days to do some exercise because the pent up energy is especially useful when I am sick, but have to keep going. I even considered doing #parkwalk this morning, but didn’t *quite* manage it, and as I write this mid morning I’m hopeful that I’m already on the mend:¬†I may have been too sick for chocolate yesterday, but this morning I managed to force down a mince pie. After all, it is nearly Christmas ‚õĄūüéĄūüéÖ


When carers have to rest haha haha

It was 10.37. The dishwasher was finally doing its thing, and it was time for me to crawl into bed with my tablet and catch a bit of Netflix and rest…

But tonight even the crawling bit was difficult. A suspected cracked rib means that almost every movement is sore.

You can guess what the recommended treatment is for a cracked rib: lots of rest. The one thing not available to family carers like me.

My own gut feeling was to Google compression bandages, as I’m trying very hard to keep the area rigid, but they’re no longer recommended as using them can lead to pneumonia.

‘Ouch’ may have become my favourite word, but the pain itself is not that bad, it’s the frustration that this injury resulted from housing and equipment that is less than ideal, and the consequences of this injury mean that I will have to give up most of the activities that sustain my physical and mental health. At least for a while. Normally a cracked rib takes about 6 weeks to heal, but how much longer will it take if I cannot rest? It’s a scary and depressing thought.

I may have to go to the GP if the pain continues to get worse, but do I ask for extra help with my disabled daughter? Will I get it? Do I deserve it when there are so many other people in greater need?

In the meantime my only plan is to look for lots of reasons to be cheerful, so watch this space…



When you wake up tomorrow #RepealThe8th

B, Disability, Abortion, #RepealTheEighth, #Together4Yes,

This is how my beautiful disabled daughter greets me most mornings when I wake up. She loves me and trusts me to protect her. And I will always do my best. But I cannot protect her from the provisions of the 8th Amendment to the Irish Constitution. Especially after I’m gone. It frightens me stupid that so many¬†terrible things¬†can happen to disabled children and adults when their carers can no longer care.

And if the worst should happen, and she is sexually abused and made pregnant, what happens then? In Ireland today the tiny beating heart of a foetus is more important than my living breathing daughter. Even though her body may not be able to cope with pregnancy. Even though her mind will not understand. Even though any child conceived may not survive.

Many on the anti repeal side keep saying that the 8th amendment does not affect healthcare, and perhaps it shouldn’t in theory. But in the real world, it does. Women’s lives have been turned upside down. Some have even died.

Will anyone notice if she gets raped and pregnant? Will anyone make sure she gets whatever medical treatment she needs. If she needs an abortion, will anyone take her to England risking a possible prison sentence of 14 years? Will the State even allow her to leave as she lacks capacity?

My beautiful happy trusting daughter will be dismissed as a hard case by the anti repeal side, a statistic, collateral damage in their war against abortion. Because she doesn’t matter to them, because some of them don’t love both, don’t care once a baby is born alive. Or even if it’s not.

So when you wake up tomorrow, please remember my daughter. Please vote yes to repeal the 8th amendment. Because the next hard case could be your sister, your mother, your partner or YOUR daughter.

And once the 8th has been repealed, let’s make a start on making Ireland the best place in the world to have a baby, the best place in the world to bring up children, and the best place in the world to be a parent. Let’s provide ALL the supports and services that families need. And watch the abortion rate drop. That’s how we should love both.

Apologies if you received this twice, I’m experiencing problems with wordpress.


My healthcare and the Eighth Amendment

Ireland's Eighth Amendment

I always thought the Eighth Amendment to Ireland’s Constitution was just about abortion, but apparently I was wrong.¬†The healthcare implications were news to me apart from Savita Halappanavar‚Äôs tragic death from sepsis after she was refused an abortion. And yes, I know that Healthcare Professionals disagree over whether an abortion would have saved her life, but more treatment options would have been available to her medical team without the restrictions of the Eighth Amendment.

And since then I’ve read about many more women who have been affected by the Eighth Amendment on the In Her Shoes page on Facebook. It got me thinking about my three pregnancies and births, and whether they were affected too, and this is what I remembered…

On my first pregnancy I developed a breast lump. My consultant told me he didn’t think it was malignant, but advised removing it during the second trimester, because that was the safest time. I had the operation, and the lump was benign, so then why was a breast cancer counsellor sent in to me the night before the operation? At the time I thought it was an hospital error, now I’m not so sure.

My disabled daughter B was born at 26 weeks, 2 weeks after my waters broke. Three days before she was born I began getting pains and the waters began to be tinged with pink. From reading an article this week, I now know that this is a possible sign of septicaemia, but my memory is that nothing was done until I began dilating properly, just a few hours before she was born. I wonder now what would have happened to both of us if labour hadn’t started?

Then there was the difficult birth of my youngest. A back to back presentation – known to be particularly painful – didn’t help.

But this time I had a birth plan. It involved walking around during labour and pethidine for when things got difficult – pethidine had successfully helped me to cope with the gruesome aspects of B’s birth.

However the plan was ignored. I was not given pethidine. I was told their gas and air ‘was different’ and given that instead. And it made me sick and dizzy as it had on my eldest, but I kept sucking at it as the pains quickly spiralled way beyond my ability to cope. When I begged for an epidural, it was denied. I was told it was ‘too late’. The next hour is almost completely blank. Apparently I ‘lost the plot’ and refused to push until I got an epidural. Eventually the midwives gave in, and summoned the anaesthetist and consultant who pronounced ‘this baby is deliverable’ and so it was. But could things have gone differently? Was I denied the pethidine because of any possible effects on the baby? Even though I knew it was the best pain relief for me? Could something have happened to youngest if no epidural had been given, and I still didn’t push?

I was lucky. I recovered well from all three births, as did two of my children. B was not so lucky, and what happened during her birth may have caused some of her disabilities. But that’s a story for another day.

Did the Eighth Amendment affect the healthcare I received during pregnancy and childbirth? I’ll never know for sure, but I certainly don’t want it to affect any healthcare that my daughters may need…



Slowing down

Some days I clock up 10,000 steps by 10am, according to my new toy smartwatch. Though I think its definition of steps is generous. Still, rushing around at 90 miles an hour has been my modus operandi for as long as I can remember and last week it caught up with me.

Yes readers, I was felled by a virus. Not a dangerous virus, but combined with stress and lack of sleep, the effect was quite scary. For a couple of days last week I thought I was going to collapse. Then lulled into a false sense of security by a good night’s sleep I took part in Saturday morning’s 5 kilometre Parkrun, pushed myself to the limit on a freezing cold morning, was the third female to finish and ended up in the GP surgery on Monday evening after also spring cleaning the house and car before the arrival of visitors.

The GP prescribed rest with a rueful smile, knowing that rest is not really possible when you are a lone parent carer. But something had to give.

I’ve slowed down. I’ve stopped obsessively exercising for now, and I’m trying to move more slowly, and think more slowly: finishing one train of thought before rushing on to the next one. I’m even doing a bit of mindfulness. It’s not as annoying as I feared. And slowly I seem to be improving.

So if I’m not around so much, that’s why. Of course I might decide I like slow living, but somehow I suspect I will back to my normal racing pace before too long!


Why middle aged women wear cardigans

Today is #WorldMenopauseDay and I consider myself an armchair expert as I’ve been stuck in this unpleasant life stage for MORE THAN TEN YEARS! Don’t worry, dear reader, this only happens to a very small number of women.

Anyway, moving swiftly on, I’m sharing something I wrote elsewhere, with a few new additions. I hope it doesn’t scare you too much…

You see the menopause is a bit like childbirth, but without¬†the possibility of a baby once you’re done. Some sail through it with no symptoms and no problems. Some stoical women just get on with life. Some are saved by HRT. Some swear by this potion, or that regime. The rest of us just drink wine. Even though we know it makes our symptoms worse.

Possible Symptoms

(These have been most of mine, I’m sure there are many, many more. One of my friends just blames everything on the menopause. It’s easier that way)

…Severe headaches

…Aching joints

…Night sweats






…Memory Loss


…Weight Gain

…The Hot Flush. ¬†Queen of all the symptoms.

They will remind you of labour contractions, as they build like a wave…

1. You start to feel irritable.

2. Your ailments become ten times worse.

3. You begin to feel dizzy.

4. You have to stop or slow what you are doing.

5. ¬†You can’t think, you just have to try and breathe through it.

6. You start to heat up, it prickles and burns.  Then you start to sweat.  A scarlet flush may creep up from your chest.

7. Just when you think you can’t take any more, it all fades away. ¬†Until the next one. ¬†Which might be 10 minutes later.

The pluses

It took me a long time to think of these…

…Bigger boobs (whether you want them or not!)

…No more periods.

…A final farewell to spot cream.

…No more fiddling around with bits of rubber. ¬†Or whatever it is you use. ¬†Except you can’t do that immediately, or you could end up with a ‘change of life’ baby. ¬†It does happen apparently.

…You can do as you please, and dress as you like. ¬†Believe me, unless you’re Sharon Stone no-one will care any more (with the possible exception of any kids you may have), and there’s a certain freedom in that. ¬†Time to embrace your inner eccentric!

What you can do

Well I tried everything. ¬†HRT was wonderful, but did not agree with me. ¬†I spent a small fortune on fancy supplements and special foods, none of which made any difference at all. ¬†In desperation I even bought a ‘magic’ magnet that you put in your knickers….what was I thinking?

What does help

HRT: a miracle for some.

Exercise: even though you won’t feel much like it.

A healthy diet: sounds boring, but you’ll probably want to eat more healthily – munch on a burger and it will sit like a rock in your stomach, weighing you down and making you feel worse.

Friends: more important than ever.

Laughter: you just have to laugh at it all.

A little of what you fancy: whether that’s wine, chocolate or crochet. ¬†Anything to keep sane and provide a little distraction.

The great outdoors: perhaps that is why gardening is so popular with older women?  More than ever I crave fresh air and sunshine.

Antidepressants: Sometimes these really do make a difference.

Makeup: the long lasting stuff

Ice packs: the highlight of House of Cards for me was when Claire stuck her head in the freezer as she felt the heat rising.

Clothing: Denim and black hide a multitude of sweaty patches! So do patterns.  Avoid flimsy fabrics and invest in cardigans and anything else you can wriggle out of quickly!

Breathe: Learn to breathe through the hot flushes, and that will stop you panicking. 

There are many people who harp on about the menopause being natural. ¬†So are lots of other horrible things: it doesn’t mean we have to put up with them.

As for me? Well I keep reminding myself that while the menopause is annoying, embarrassing and exhausting, it’s not a disease and it’s not going to kill me, so things could be a lot worse. I’ve managed to shift most of the weight gain through diet and exercise, and some of the other symptoms have lessened over time, apart from the hot flushes. In the meantime, I will just keep adding to my collection of cardigans…