Work and chronic illness

I’ve been thinking a lot about work at the moment, I work for the brilliant charity Scope and have been off sick since my emergency surgery at the beginning of June. They have been great but that doesn’t stop me feelinh terribly guilty about having time off and the pressures that puts on my team.

During this time off, I have also found out that I got my own show on BBC Radio Sheffield and so it’s felt pretty weird to get a new job when I’m not even at my current one. I’m thrilled to start presenting my radio show and there was no doubt in my mind that I would be staying at Scope and doing one evening a week with the beeb.

They too have been really understanding about my recovery and we’ve prerecorded the first two shows to fit in around my time off and my health. We’ll be going live on the 5th September!

I obviously also run this blog and the so bad ass social media and I have to admit that everything is getting a bit much.

I love all the work I do but as I feel my body fails me year on year, it’s hard to fit everything in and the fatigue, joint pain, aches and ostomy bag troubles do make life really difficult to be in the work world every day.

I give myself a hard time, I push myself so hard because I despise the fact that I can’t do everything that I’d like to do and I’ve got in a bad habit of cycling through the phases of push, push, push, crash. And repeat.

Im questioning dropping my hours with Scope but this brings on waves of anxiety, both financial and the feelings that I’m letting them down, that I’m so useless I can’t even do the hours and the job they hired me for! I think this is exasperated by the fact I’ve been off sick for so long. I’m terrified of letting them down and scared I’m not up to the role any more. I need to say this is all coming from my head, not at all from my employer.

Having a chronic illness is a full time job in itself, I wake up almost every morning feeling hungover and like I’ve run a marathon and adding in full time work just is exhausting and draining. I worry massively about whether working full time and then consequently sleeping and resting a lot means that my kids are missing out. Am I a good enough mum? Am I there enough both physically and emotionally?

And so to add in one night a week doing my radio show is scaring the pants off me.

How do I fit everything in? How can I be ‘enough’ at work, on my show, on the blog, as a wife, as a friend, as a volunteer, as a mother?

Yet dropping hours at work will affect us financially, it makes life harder for my husband who will have to do more hours to make up for it, it will affect my team at work, my role and maybe my potential as an employee.

I feel like I can’t do right for doing wrong, like whatever decision I make will negatively impact someone. But I need to think about my body, my mind and my health.

The last surgery broke me, it was so tough to get through and the recovery was horrific. I’m still getting the odd panic attack whenever I think about going to see a doctor or hospital. I’m scared about my future, I’m worried, I’m still in pain, I’m still recovering.

I feel I need to make changes to myself and my lifestyle to self care more. I’m seeing a physiotherapist, I’m looking at my diet, I’m thinking about my attitude and how I can live a more positive and happy life.

On one hand I feel that reducing my hours will allow me down time and a better work life balance which could really benefit both work, the blog and the radio show, but on the other I find this decision upsetting and embarrassing.  I hate feeling like my body is letting me down.

I’ve no idea how best to move forward and I really need to start some planning around the desision to get to a point where I’m happy and comfortable

Anyway I’m sorry there’s no resolution in this post but I’ll update when things change and I’ve made some decisions

✌🏽 & ❤️

 

Sam

3 replies
  1. Pamela Conley
    Pamela Conley says:

    Hi Sam, I follow you from the US. It is my observation that the first person you need to discuss these feelings with is your husband. After you know his true feelings, you will know how to proceed. However, none of it can be done if you are not well. It sounds like you have a wonderful employer so they should be your second person to talk with. They may be just fine with you cutting back a bit. I am glad you are seeking another set of eyes and ears through your counselor. Having a neutral person to process your thoughts with is so important. I recently returned to work part time. I work 20 hours a week with A Plus Health Care as a Medical Escort and Community Integration worker. I retired from my full time job as a Mental Health Case Manager where I spent 18 years doing the same sort of work I did as a case manager. Shortly after I retired in 2016 is when my health issues began. I had to have some female surgery in Feb 2017, then in early June 2017 I had throat surgery. The recovery from throat surgery was brutal! Then, I flew to the Salt Lake VA hospital where I had the throat surgery to have a check up on the 25th of June. The night before the appointment, I was returning to the motel from supper and fell a block away from the motel over a piece of concrete that had sunk on the sidewalk. I laid there for a while and someone found me and helped me to the motel where I had a cab take me to the VA hospital Emergency room. I had broken my foot. They did what they could and got me in to see the Foot doctor at 10am the next day. He told me to cancel my flight home and call my husband, that I was having surgery to put in a screw into my bone. I waited there after the surgery until my husband came from Montana to get me. I was non weight bearing for 90 days. 12 days after the fall, after supper one night, my lower bowel died in less than 24 hours. I was rushed into surgery and was 3 minutes from passing away. The doctor and anestiest saved my life. So I was cut stem to stern, had a bag for life and non weight bearing on my foot. The doctor wanted me to go into a nursing home but I told her I wanted to go home. I went home and had in home assistance for awhile until I forced myself to crawl up the stairs to the shower and my bedroom. My husband had fixed me a place to sleep downstairs in the dining room for the first two months. However, my belly pain never stopped. I could barely eat anything and lost a ton of weight. I suffered for 7 months until 17 Feb 2018 when I had to go into emergency surgery again and once again, almost died. The first ileostomy had strictured shortly after the first surgery and there were many adhesions. The doctor said it was the worst he had seen in his career! Finally, things began to work as they should. I had lost almost all of my hair, was horribly depressed but managed to get myself to the therapist weekly. In June of this year I became separated from my husband after years of verbal and mental abuse. I have given him one year to get it together. I am in my own place and frankly, really like it. I got this new job which I love and although I am often very tired, I have made it work. So trust me when I say I can relate to your circumstances. I will pray for you that God will give you the correct way to proceed. Continue with therapy. It has done wonders for me!

    Reply
  2. Ruth Cox
    Ruth Cox says:

    Hi Sam,
    I recently had this dilemma too. I love, love, love my job but was really struggling to be well enough to spend time with my family after a week at work. My husband and I decided we could afford for me to work 4 days instead of 5 and my boss was amazing and agreed to this.
    I now have Friday off work and mainly do nothing so I can then enjoy the weekend with my family. I still feel weird about working part-time and kind of miss work on a Friday but it’s really great to have a day to catch up. I mainly meet friends for a coffee!!!
    Good luck with your decision x

    Reply
  3. Naomi
    Naomi says:

    I hear you. I feel you. It sucks! I am a lone parent to a ASD adult son (20). All the financial help I had, is no longer available to me. I refuse to go on the dole and live like that, been there and done it! I work my butt off. My life is about work. My house is a pigsty, my relationship with my son is rubbish and working all the time, makes my body hate me even more. I need rest but I cannot get any relief. I do not have as many medical issues as many but that doesn’t make my life feel any less hopeless. Yup, hopeless. I read the guilt blog first… that sucks too! Vicious circle and I have no one to share it with. All on my lonesome. You can only ‘crack on’ for so long… sorry to hijack your blog. I guess I’m trying to say (badly) that I understand. I am sorry you’re suffering. Well done with the radio show job. I have been doing an internet radio show for the last 6 years. It’s great fun and it really helps with the confidence thing. What we can, we do… right? 😉 x

    Reply

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