I’ve been wanting to write a post for ages, but no time has ever felt right to put down what I want to say. I often find that – that I can’t write or blog or express myself when I’m in the middle of something – going through something, trying to get my head around things.
For a while there every step forward I took seemed to be accompanied by three backwards. The children have been sick. Nothing too serious, the usual tummy bugs, coughs and colds but enough to completely disrupt bedtime routines and leave us cowering from 7pm every evening, the dread building about what sort of sleepless night lay ahead of us.
Just as we thought they might be finally settling or the teething, cough or cold was healing, another bout of something would come to knock them, and us, down. I had an idea this year to have a bit of shindig for Halloween, maybe invite the neighbours over for drinks. Instead it was spent with my very ill one year old, holding her on my knee as we watched her sister head out trick or treating without us. Bonnie was far too sick to be anywhere but home with us (or possibly the hospital, I was really worried for a while and it brought back all the dread of her hospitalisation when she was a newborn for bronchiolitis). So much for dressing up, we barely left the house for two weeks during the worst of the sleeplessness and phlegm.
The lack of sleep has been grinding. It had a brutal effect on all of us – a domino wakening as one child cried, setting off the other, sometimes on the hour, every hour. There have been times when I’ve wondered if our current routine is as bad, or worse than those first weeks with a newborn with round the clock feeding.
And there was nothing for it, but to go through it. It was nobody’s fault that they were ill, or that our babies needed to be comforted. At times, through gritted teeth and tears that threatened to fall, I reassured myself, it won’t always be like this, it won’t always be like this.
At other times I accepted that at that point in time, in these unrested, cruel night and days, I was utterly miserable. That the thoughts of going away somewhere, a hospital say, a psychiatric ward, didn’t sound too bad at all. At least you’d get a rest. And maybe some nice, calming pills. I am not being flippant in that statement either, there really were such low moments that I wondered if I was losing my mind.
But, things have improved. There have been a few (not many) nights where the girls seemed to have fallen back into some sort of sleeping pattern where we can get a few hours – maybe even up to six hours of sleep. Six and half is great for me, that’s really all I can ever sleep anyway. After that I wake into fretful, unfruitful mornings in the dark, tossing and turning and watching stresses and small fears monster in my mind. I know it’s a sign of stress. But I’m not really sure what I have to be stressed out about anymore. Apart from the kids of course.
Health and wellness
The other issue I wanted to write about, but am a little fearful of expressing, is all the health issues I’ve been facing lately. It’s taken me quite a while to realise that something wasn’t and isn’t right, because most of what I’m suffering could be put down to being a busy Mum, being a bit stressed out, being tired, regular run of the mill stuff that I’m sure we all suffer with from time to time.
I have Meniere’s disease, which is an inner ear disorder where you lose your hearing, can develop balance issues and suffer tinnitus and vertigo. (I got that confirmation just a few weeks ago, but I’ve been attending an ENT on and off for five years). When you have vertigo, this can leave you very fatigued too, so that was how I explained the bouts where I could barely move off the chair to myself.
After Bonnie was born, I was diagnosed with post natal depression too, another illness that can leave you very tired or foggy brained. Whenever I got really tired I put it down to either Meniere’s or being a bit down and tired – nothing too much to worry about and once I was seeking treatment for both, I felt I had everything under control.
And then, one day, I realised, that along with this awful fatigue, I was suffering quite a lot of pain. Because I have some back issues (wow, I’m really a healthy catch, aren’t I?!) again, I didn’t think it was too much to worry about. The sore knees were probably because my back was a bit out, or because I never wear my insoles to ward against the curses of flat feet.
The shoulder pain was because I slept funny, the pins and needles were because the shoulder was out. On and on it continued, pains all over, from muscles to joints to on and off headaches caused by a sore neck. Combined with the fatigue and nasty skin infections and lesions that refuse to heal, with constant kidney infections, mouth ulcers and other minor complaints, I looked at myself one day and realised I was a wreck.
It couldn’t be normal to be in this much pain, I thought. I know I’m a busy Mum, but surely at rest, I shouldn’t hurt? Surely, I should be able to get off the couch or get up to take pain killers, not lie there agonising, because I’m too fatigued to even reach out for them.
Back to the docs
And so, it was back to the docs, where I seem to live these days to ask for more tests to try and find out what’s going on. The bloods were duly ordered and while I convinced myself that I had a) lupus and / or b) thyroid issues, the results came back to say that I had raised cholesterol (stop eating all the cakes Nicci – the doc actually said that, turns out you can get caught out when you only eat biscuits for breakfast) and raised iron levels. No lupus then or thyroid issues.
My greatest fear was that nothing would show. When you feel terribly unwell but the doctor tells you they can’t find anything, it is frustrating and you feel everything may be in your head. You also want a label, something that you wave at your husband when he tells you to get out of bed and you can say – darling I cant, I’m a leper / hemophiliac / have smallpox etc.
I promptly stopped taking the iron supplements I had bought. You know the way if you’re tired, they say you need a tonic and iron? Well be careful. Too much iron can cause chronic tiredness too and supplements will only exacerbate the condition.
Next on the agenda, was a test for haemochromatosis, a common blood condition in Ireland where the body cannot rid itself of excess iron and it builds up in yours system and joints. Left untreated it can be very dangerous – literally causing your heart to stop, but in a younger person, like me, there wouldn’t be much damage at this stage and it’s completely treatable if it’s diagnosed. (They basically just bleed you!)
I’m waiting on the results and its seems they can take weeks and weeks – around three months, so it’ll be a while before I know. Personally, I still think it will come back clear as there’s no history of it in my family and usually women, are self treating before the menopause.
I still think, in a few weeks, I will have no answers and I won’t be any further down the diagnosis track! Other things I’ve been concerned about is Lyme Disease, depression manifesting as pain and even worse, something sinister that keeps being missed.
Doctor Google doesn’t’ help, but hey, I’m a wiki expert now on most human illnesses!
One of the hardest things I’ve found through this whole process is the impact its had on my lifestyle and the way it affects parenting my children. I feel like I’ve gone from a vivacious young woman to a crippled 90 year old on her way out.
I stopped organinsing to do things. I stopped wanting to go anywhere. Days where I could get up, get dressed, clean the house and go out somewhere were a massive achievement.
Now if I have to do something or go somewhere that requires a lot of energy, I have to rest beforehand and certainly after – it can take me some time to recover from a long car journey for example. If I have to sit in the same position – at the cinema, on a train, my joints will be so sore when I get up to move, that I’m slow and have to take it really slowly to get them working again.
Watching people exercise makes me sad. I wonder if I’ll ever get back a level of fitness again.
My mental attitude, thankfully lately, has decided to tackle whatever is happening head on.
I asked the doctor for proper pain medication to try and treat the daily grind. It seems to be working. I am regimented with any medication I am on, and don’t miss, making sure I have my prescriptions in place, as best I can.
I’ve bought supplements for all manner of things and I’m taking them all – Devil’s Claw for joint pain, Cranberry Tablets to ward off kidney infections, Evening Primrose Oil for the mental hormones, Vitamin B for the nerves.
Over the past week or so I decided to start eating better – not a diet, but just making sure I wasn’t skipping meals and making up for it with junk. More water. Less booze. The usual. It’s helping, I’m feeling brighter, a bit more confident that I can perhaps try, in some way, to support healing myself.
I’ve been listing to Jayann Maher’s Mastering Your Wellness Podcast – where she interviews different guests on their own stories and advice on how to live well. I like it – it makes me think – what are the little changes you can make that will overall, improve your life?
I’m a very driven person, I like to achieve my goals – I like to try to be happy. This whole thing has knocked me back, to the wall, but as those genius 90s pop band TubThumping said, I get knocked down, but I get up again (pissing the night away... pissing the night awaaaaaaaaaaayyyyy)
One last thing I wanted to mention is that even though I’ve been suffering (as have my whole family as they give me time to rest and moan to them) I somehow have still managed to post some lovely pics and very flattering selfies in full make-up, as well as attend some events and go out and do things.
I’m not dead yet, and I’m well aware that there are many, many people, who have chronic illnesses, diseases and suffer severe, limiting pain everyday.
Sometimes appearances can be deceptive; behind that picture of a lovely event and smiling children, might have been four hours in bed to get to that point, or an hour spent in tears afterwards. I’m not being a moany Michael, I guess I just want to say… you never know what people are going through or what ailments, emotionally and physically they may be suffering.
I know that now. Before this, when I always felt well, I don’t think I fully understand that.
I do now. Sufferers, I salute you. (If I could just raise my poor aching arm high enough).
I’m doing a live Spoken Word performance on Thursday 22 Nov in the Droichead Arts Centre, supporting renowned poet Stephen James Smith. Tickets are €12 and I would love if you could come! You can book here.