What we take for granted

This week I have found myself getting more and more angry and frustrated with the situation I am in, and have found this week to be the hardest one yet, psychologically!

I am 5 weeks into hospital life and it is really starting to get to me. When the control of your daily life is taken away from you, you really start to think about everything you previously took for granted and obvious frustrations arise. I have tried my best to be positive because I generally have always been a positive person, but breaking points are inevitable in these situations, and I reached mine this morning over….toast (of all things)!

I didn’t intend to share some of my more negative feelings on here, as I don’t want this blog to be a pity party, but these low periods are also part of the journey (probably lots more to come too) and so it’s important I include the bad as well as the good. So I thought I would write these down to vent, offer a parallel to anyone going through something similar, and also help those around me and anyone dealing with a family member that is sick understand how we might be feeling or why we might be reacting a certain way.

Here are my top three things that are driving me crazy:

1. Four walls – I haven’t been allowed to leave my hospital room for 2.5 weeks, this is really tough, just being able to walk up and down a corridor in the hospital would alleviate some of my frustrations and enable me to get some much needed gentle exercise. I’ve noticed a significant change in my body which I’ve found really difficult. I have gone from exercising 6 times a week to zero, and it has taken its toll. My muscles have shrunk and my physical ability to do something as simple as a lunge is shot! I’m trying to get up and pace my room as often as I feel up to it and my basketball hoop (thanks Julie) has really helped keep me moving. But it’s going to be a long time before I’m playing netball, lifting weights, and running again.. (but I’ll get there)! What I wouldn’t give to go for a run along the seafront…

2. The lack of privacy – the constant flow of staff in and out of my room at all hours results in not a lot of privacy and lack of control over sleeping hours. It is great how often my vitals are checked and the regular replenishment of beverages is welcomed, but it does take its toll on you. I can’t lock the door or say “no sorry not today”, and so you have to resign to the fact that you have lost some independence and private space, it’s a little suffocating!

3. Hospital food – I completely understand that feeding an entire hospital on a budget must be one of the biggest asks of any hospital, and in my first week here I didn’t really mind the meals. I was thinking what a result, no cooking and I don’t have to think about what to have for each meal… Oh how wrong I was!! By the second and third week of the same breakfast everyday and repetitive option of meat, mash (Smash), veg and gravy for lunch and dinner, I was ready to cry as each meal arrived. Feeling a little blue and depressed already, now in week 5, the food situation is close to tipping me into full scale toddler tantrums! On top of every other emotion you are feeling, not having a tasty, healthy meal is just demoralising. I have been so lucky to have family and friends bring me take outs, snacks and homemade meals/soups! I genuinely don’t know what I would have done without these meals, they have kept me sane… (seriously look how happy I am with that Nandos)! Thank you everyone, I would have lost it a long time ago without them!! If you have a friend in hospital or home sick, bring them some homemade soup, you will probably make their week!!

This morning when my toast didn’t arrive at breakfast, I lost it. The staff were obviously more than happy to get me more toast!! But it clearly wasn’t just the lack of toast that led me to pulling the covers over my head, I had been keeping everything bottled up, and it was inevitable that I was going to have a wobble sooner or later… I feel better for writing all this down and venting, so thank you for taking the time to read through this not so happy post (if you are still with me by this point), but as I said it’s all part of the process and important to hear about the highs and not so fun lows… It is important for me to remember and take on the message from the picture for this post, I am doing the best I can.

As I mentioned in my last post, this week and next we are waiting for my neutrophils to climb back up (I believe 1.0 is where I need to be), before they can make a decision as to when they can send me home for a short break between phase 1 and 2. Whenever this may be I know I will have the best meals of 2015 and some home comforts like a bath (!!), so I’m holding on to those thoughts of homemade food and have made a list of what I want first… I’m thinking spaghetti bolognese, or maybe lasagna, ooo chilli con carne…. maybe a curry… a fresh salad!! The list is endless… I want them all!!

“The things you take for granted, someone else may be wishing for”