Category: Bad days

Welcome to my ‘dark side’

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It’s been a few weeks since I last wrote and it has been a deliberate decision. I’ve had a difficult time lately and knowing how to explain how I feel without sounding melodramatic can be hard. After a weeks holiday (well my husband took a week off work and we had some lovely day trips) and with some time to think things over, I’m ready. Please don’t be mistaken that I’m looking for sympathy, just understanding and for those reading this that are going through kidney failure or those about to or those that have already gone through it, I’m sure you will relate to what I’m about to write.

Life is good, in fact it’s great. Why did I never acknowledge that before? Being able to get out of bed and plough through a working day then have an evening of indulging in whatever takes your fancy and then doing it all over again without a care in the world, subconciously pushing your body to extremes over and over again, instant recovery and joy…oh I know why, because I haven’t ever been able to do that. And, it’s only now after twenty two years of diabetes,  nine months on dialysis and ten months on the Transplant List that it hits me. I haven’t lived, not properly and just the thought of it fills me with sadness, anger, jealousy and resentment. For those that know me will know that negativity isn’t something that I do, but deep down it’s always been there. Buried underneath my ‘can do’ attitude, my positive facade and my will to succeed is a deep disappointment with the hand I’ve been played.  A glimpse of a beautiful sunset, family time or the first blooms on a trying plant help to suppress my dark side, to keep it at bay but at some point these feelings need to be addressed. Mine have surfaced and need to be dealt with, be accepted as ok, so here I am about to explain how it feels, well try to anyway…

Social media is a wonderful thing and has kept me entertained for many hours; hilarious clips of pranks, talking dogs or incredibly cute pandas who actually look like humans in fluffy suits are all a pleasure to watch when they appear on your news feed posted by a friend (normally my husband) however it is also a massive billboard for all those things you’re missing out on:

Banging nights out – nope, they are long gone, involves too much fluid and I’m not sure I can stay awake that late. Plus doing dialysis with a hangover is awful. I tried it once, not good, won’t be doing that again in a hurry.

Globetrotting – being on dialysis doesn’t mean I can’t travel, I can but I have to be suspended from the Transplant List and that’s not something I’m prepared to do now that I’m ten months in. Even if I did, I’m not sure I’d have the energy to fully enjoy myself.

Children – right now all my friends are having babies and while I have never been lucky enough, being on dialysis, diabetic and with a transplant ahead of me, as heartbreaking as it is, it’s not a risk we’re prepared to take which might mean never and for me that’s a dream shattered. Instead I’ll just get more cats, they can entertain themselves whilst I’m plugged in and they make less noise, maybe it’s a blessing?!?

Dieting –  I don’t have time for that nor the inclination to be miserable all the time. Healthy chocolate alternatives and milkshakes full of fairy dust aren’t for me. Especially when it’s not even on Doctors orders. Grabbing something that I can eat one handed, won’t add on extra fluid or raise my potassium levels whilst increasing the amount of iron I have stored and that is a slow releasing carbohydrate is enough for me to deal with. Eat less, exercise more and be happy doing it, simples!

All in all, people’s lives are thrust in front of us on a daily basis: magazines, TV, post and the web. Beautiful images, celebrations and words of inspiration copied and pasted or ‘shared’. I love seeing how my friends and family are doing, joyous milestones in their lives, all of which my ‘dark side’ doesn’t want to see. It can’t bear the freedom others have, openly and honestly jealous. To ‘It’ it’s abnormal, fiction, a far off dream. A dream that can’t be reached, not now, maybe never. It also gets very upset that some choose to pull the cloud of sadness upon themselves, can’t take responsibility for their own lives and most of all those that are bored. Not even I can get bored sitting plugged into a machine for four hours three times a week.

But this is not me, this is the inner me talking, the me I know needs to be silenced. I know that I won’t see the world in this light for long; some point in the near future the dark haze will be lifted and I will be one of those taking a selfie on the top of a mountain with a glass of vino in hand. It won’t be long and I’ll be doing the things that every thirty three year old woman should be doing. For now be understanding as I’m going to need to let these emotions out now I know they are there, an honest part of me, a part I can no longer hide. Please give me hugs when you see my bottom lip quiver or hold out your hand when I stumble and for those going through the same, know that it’s ok to feel this way.

My future however will be awesome, beware and remember, as I do, life is great!

Not everyday is a good day

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Why is it when you have things to do it all goes wrong? This morning has been tough, even for me. I surprise myself sometimes with how I deal with what I have to go through, today I was being tested, but I don’t like to lose.

After sleeping pretty much most of the day yesterday I woke up this morning to the sound of my alarm expecting to feel refreshed, wishful thinking! Dazed and feeling exhausted, I mean proper exhausted, the kind when breathing even feels difficult. I know why it is, my haemoglobin is low again but this morning I can do without it. I must get our cat Frank to the vet, then I can plug myself in. It’s not my normal way to plan things; I normally plan my day so that I do dialysis first then if I have the energy I’ll do what I need to do in the afternoon. This way there is no pressure on me. If it takes me an hour to connect myself to the machine then fine. But not today, I needed to be on and off my machine in time to pick Frank up. There’s the problem, right there, me. I’ve set myself up to fail right from the start.

After dragging myself out of bed, having a quick shower which I struggle to breathe my way through (laboured breathing can be a sign of anaemia, low iron stores and low haemoglobin, a symptom of kidney failure. Click here to read more on Renal Anaemia) I throw on some clothes and make my way past my dialysis room to grab the cat. Frank gets to the vets on time, I make it back home in one piece and start setting up my machine. Plenty of time to clean my blood, remove excess fluid and catch forty winks before collecting Frank.

I lined my machine, laid out my needles and flushed everything through with saline, my usual routine, nothing different from what I had done two days before. I checked my weight and my blood pressure, programmed the machine and then sat down ready to start needling.  Dave (my fistula) is cleaned and using my fingers I feel for the pulse, the ‘thrill’. It’s buzzing nicely and I line up my needle ready to pop it in. It slides in but I know I haven’t hit the spot as it doesn’t feel easy, it feels resistant so I pull out and try again. I check my angle of the needle, reposition my arm and try again and again and Again. After five minutes I clean my fistula, reload my needle with saline and start over. The last time I dialysed it went in first time, I try to remember my position then, the angle I used but everything appears to be the same. It’s obviously not because another fifteen minutes has passed and I’m still no further forward. In fact I feel I’ve taken ten steps backwards.

I take a break, walk around the kitchen and have a little talk with Dave. ‘Come on, be nice to me please’ I plead with my arm. If anyone was to hear me they’d think I had gone crazy and had someone held hostage under my jumper. I do a few stretches and sit back down. I clean my arm and try a new needle, this usually works. Like muscle memory I think the needles remember! Nope not this time, this time I tried everything I had been taught, the frustration was building with every attempt and I could feel myself getting upset. My arm, which usually doesn’t hurt was starting to hurt, telling me to stop and normally when you get tired, when things hurt you stop, you do something else. But with dialysis you can’t really do that, it needs to be done. Thoughts of what I will need to do if I can’t get my needle in creep in and I resist the temptation to be drawn into putting Plan B into action.

I wouldn’t say I’m stubborn but I am determined and very proud. There was no way I was going to let something that I’ve done almost every other day for the past seven months get the better of me. ‘I can do this’ I tell myself, ‘stop putting so much pressure on yourself, cut yourself some slack’. I reach for the sweets. Being diabetic I have an emergency stash, today was an emergency of a different nature. One rhubarb custard down with a little shuffle of my cushion on which my arm is rested and I go again. Effortlessly the needle slides in, laughing at me as it took its place perfectly in my fistula. The blood released immediately and the colour of my blood filled the long plastic tube attached to the needle. Only forty-five minutes late!!! The relief arrives and Plan B is safely put back in its box.

One down, one to go. For haemodialysis you need to insert two needles, one to take the blood out (done) and one to put the blood back in once it’s been through the machine. I wasn’t in the clear just yet. Clean, position, feel the thrill, line up, insert, Bobs your uncle. The second needle was simple, the way the first was meant to go. The next four hours flew past with no problems, what was all the drama about?!? Now I just need to remember how I did it for next time, wish me luck…