The isolation and guilt that is associated with being chronically ill

Disclaimer: This information within this blog focuses on mental health and depression while dealing with chronic illnesses which may be a sensitive topic to certain viewers. It is not intended to be taken as medical advice and we always recommend that you seek the care of a health professional if you need help with your own mental health.

I’ve been contemplating writing this for a while. I have spent a lot of time either sleeping or being alone for the last year and I’ll be honest it has really impacted mental health to the point of hitting the depression stage and my mum having ‘that chat with me a few weeks ago’.

The isolation

Part of the fun that comes with being chronically ill is the isolation that comes with it. I am spending the best part of 12 hours a day either asleep or watching reruns on the iPad.

Now don’t get me wrong, between my cousin, my bestie & my family they have tried to keep me entertained but at the end of the day things like maternity leave end and they all work. I can’t just expect them to drop life to keep me company.

I do my best to keep up with interests such as knitting, reading or my trusted pencil case but due to the medication and the feeling fatigued all the time, it takes a lot of willpower to find a spark of interest to be able to carry out my hobbies.

The isolation comes into play because I can’t currently drive due to the controlled medication having an effect on my ability to judge things correctly. Anything I do causes pain so I’ve put myself into my own imposed isolation because understandingly I am a little crabby and caustic to be around.

My husband is now working from home 3 days a week and it’s nice to catch him on his lunch break and to not feel so alone all the time.

Depression

Spending a lot of the past year on bed rest and limited days out to the hospital has had an epic impact on my mental health.

I am known as the person who finds light and laughter in every situation until they started me on the zoladex. Chemical Menopause has turned me into a person I do not recognise. It has been quite brutal because I can not control my emotions, I have become rather short fused with my temper, I can’t control the tears and I’m not the person you would want to be around (my own neurosis).

Not having periods and gut wrenching pain from those for half the month has been amazing, (can’t wait for my hysterectomy). But this has led to me either sleeping or hiding away in the pit that is our bedroom.

Not wanting to shower, take care of myself or eating led to a trip up to the GP and I am now on an increased dose of sertraline. It is helping but I still have some low days.

The guilt

How do I count the ways of feeling guilty for being ill, having no control over when I can have the surgery, or just how much of a burden do I feel? 1 100, 1 200 etc…

The last year really has tested the ‘in sickness and in health’ part of our marriage vows.

There is no way of avoiding that guilty feeling, however I do talk to my husband about this to make sure that if I’m not pulling my weight then to tell me so I can help more with things that I am able to do.

My husbands nickname is Panda and I also have a panda tattoo because he panders to my every need. Having been with my husband for nearly a decade I have somewhere along the line fell into this pattern of allowing him to cater to me being ill and have feel like I have lost my independence. (This is in no way my husbands fault, he’s just very adept at looking after me and I am incredibly lucky to have him as my for life partner). We can also read each other without having to ask how the other feels or what they need.

I just need this hysterectomy and have buddy removed so I can get my life back and return to the fun loving crazy wife I normally am (Sorry Ben).

The talk

About a month ago I had a few really bad nights sleep due to the amount of pain I was in. Our dog walker came over but couldn’t find Ruby (our youngest pup), because of the menopause symptoms and me not wearing a lot of clothing due to sweats our bedroom is off limits, turns out Ruby was just fast asleep with her mummy.

However there have been incidents where the pups escaped the garden due to us being unaware that next doors fence blew down during a storm the night before. Dog walker panicked and rang my husband, my husband then panicked because he couldn’t get a hold of me, I woke up to my sister in law with her hand above my face checking I was still breathing… (we have a key safe for emergencies).

(My husband panicked because I’d been doing some rather freaky stuff whilst sleeping and he had to wake me up to get me stop what I was doing).

Side note: When I’m asleep (asleep), the zombie apocalypse could take place and I’d still sleep through it.

This led to my mother also being called and my mum came over and had a talk that was probably well overdue. I cried, mum cried but she gave me the boot up the butt that was needed.

I explained about the feeling depressed and that I felt I had no control due to the endless waiting for all my consultants to agree to the surgery. I also said that I felt like such a gigantic burden on both my husband and family and that I stopped asking for help because I’m too proud to admit that I’m struggling both mentally & physically because I’ve always been so damn independent.

She got me up to the doctors to get new pain meds to help with breakthrough pain and I have been referred for a sleep study to try and work out what is causing the flinching, funny breathing and horizontal dancing in my sleep.

For those who know me you’ll know that I am against staying on pain meds for extended periods due to watching the documentaries on them and having had personal experience with a family member trying to get them off of the patches.

The one medication I take consistently that’s meant for pain instead helps to control my stoma output so I don’t end up in hospital for dehydration.

Since being on the new medication I am functioning better, I’m having more good days than bad but several good days still wipes me out for 48 hrs and I’m also still having the weird sleep episodes which doesn’t help me or my husband to get a good night’s sleep.

Until the surgery

Surgery is hopefully going to be in October, they have all agreed so I’m now waiting for the pre-op assessment appointments. I am still up the hospital 2-3 times each month for Zoladex infusions, bloods & general gynea check ins with me.

My daughter is now on her summer holidays so she is helping me to do the house work and having her home means I’m also less lonely as she spends a lot of time with me talking about make-up, life and her friends alongside movie dates.

I am now going out once a week on a family date to the cinema or for food.

I now get up every morning, change my pyjamas and establish a routine even if I am going back to bed.

I have also dug out my colouring books and am actively spending time colouring in and away from any iPad or phone screens.