My Life With Adrenal Insufficiency

Bedbound And Struggling To Accept My Poor Health

Chronic illness

Bedbound And Struggling To Accept My Poor Health

2018 has not been good to me in terms of health. I have a Chronic illness and my health fluctuates a lot. I was diagnosed with Adrenal Insufficiency in 2013, not long after I married my sweetheart John and life has been one roller coaster ride ever since.

I was once knocking on deaths door. I had so many adrenal crisis and hospital admissions between 2013 and 2016. In fact it took a near death experience to decide enough was enough and we took out a loan to help to pay for private treatment and get started on the Adrenal Pump in London.

I was set up on an Adrenal pump in 2016 which has done wonders for keeping me out of hospital and helping me to better manage my cortisol levels. In fact 6 months after I went on the pump I visited my Endocrinologist in London and he said to me and my husband he was so pleased with my progress.

My Endo said, when he met me I was dying, It’s the truth, I was not far from it to be honest and the pump has been a life saver literally.

Now I am on the Adrenal Pump, I don’t have Adrenal Crisis and hospital admissions regular anymore. I still struggle with my Adrenal Insufficiency day in day out but I live with the illness at home from the bed or the sofa in the lounge.

Life is better in the sense my husband does not have to drag me up the stairs every night to put me to bed. I can climb the stairs on my own these days using the stair rail. Some nights I’l feel dizzy and wobbly and my husband will walk behind me as I climb the stairs to prevent me falling down but I can do it myself.

I don’t need the wheelchair when I go to hospital appointments. John used to wheel me but I can manage the short walk through the hospital. Of course it burns me out and I have to rest when I get home but I can do the short walk when before I could not.

I had a good month in February where I was able to walk for about two weeks quite a lot. I couldn’t believe it. I thought my health was really improving but it didn’t last. I even made the trip to London (on a double dose of medication) to see my Endo and attended a cooking class but that was a struggle and the only ting I’ve done this year. I barely made it back home in one piece.

My health has gone downhill since February and right now I need the wheelchair again. if I am to go on any long distance outing it would cause me to feel super unwell and if I was able to go to the Supermarket I am back to needing the Scooter.

I’m not sure why I my health has gone backwards but it has and I’m awaiting an appointment where I will be asking for a Cortisol Day Curve to test if my Cortisol needs have changed. It usually takes 3-4 months to get one on the NHS and my last Endo appointment in Preston was cancelled when I turned up and so I won’t be seeing a specialist for another 4 weeks.

In the meantime I am housebound. I really am. I love to go to church and have only been 3 times this year. It’s crazy. It’s the one place I would go every Sunday if I were well enough and I feel sad that my health is stopping me from going to church.

I missed Sylvia’s sports day for the third year in a row. I have not attended any of her assemblies or events this year. I did get to attend the Christmas fair last year but 2018 so far has been pants!

I have more than one health condition and I’m going to have tests to figure out why I am so unwell but these things take months. I know things may be like this for a long time, maybe the rest of the year and beyond and that is hard.

It’s hard to accept that I am so unwell, that I am so unwell that I struggle to concentrate. It’s hard to accept this is my life. I had a big cry tonight. I cried and wept and told john it’s not fair. We discussed the difficulties I am facing emotionally dealing with this and the frustrations I feel about not having a normal life.

I feel frustrated. I feel sad, I feel grief and I feel heartache. I feel sad for the things I can’t do, I am finding it hard to accept my illness right now. I’ve had counselling in the past but as things have gone backwards it’s made accepting this life difficult once more.

I am trying. I am still blogging. However, I am not not blogging how I used to. I can’t. I do not have the energy or strength or the brain power. I am writing posts when I can and sharing ideas, I prepared months ago when I was more well, but I’m not doing much more than posting, my engagement on social media has gone down and I am not in a position to work at it right now.

I will pick back up in future but I am going to go slow and steady when it comes to my blog over the Summer and focus on trying to improve my health and spend as much time as I can with Sylvia.

I do feel upset and stressed. I feel sad and angry. I feel confused and frustrated. I guess my current health makes me feel an emotional mess as well as a physical mess but I will get through this tough time. I will keep on going and hopefully things will pick up once more, even if it takes a good six months or longer.

I’ve thought about quitting blogging completely, however I don’t want to. I put in 3 and a half years effort and will not throw that away. I will simply go at a much slower pace and not worry about growing social media channels. I’m not stressing over it. If I lose opportunities so be it. I am not well.

I’m always sick and always have chronic illness but right now it is worse than it has been in a few years and I am finding that hard to deal with. I will be strong and wipe my tears away. I am going to do my best to get through the rest of 2018 and just survive.

I’m really not sure how things are going to pan out but I will just have to get through each day as it comes and survive. I am housebound once more and for now it’s how things will stay except for health related appointments which I will force myself to go to and then recover from after each one.

I have one big event to go to this year and it’s my best friends wedding. I really am going to find a way to just go and even if it means attending only part of the day I am going to because I wouldn’t miss it for the world. Everything else though has to wait including this blog.

Angela

5 Comments

  1. You are right Angela! It is not fair….Sending love and hugs! It does sound like the best thing you can do is take one day at a time…I hope you get to the bottom of whatever is making you feel so unwell x

  2. I spend a lot of my time in bed, due to my disability. I try to spend as much time as possible with my grandkids, so they don’t feel left out

  3. Wow you are an inspiration to suffer as you do and compile a great blog too. I hope you get your health under control.

    1. Thanks. it is hard at the moment but i do get a lot of help with the blog and have to blog to pay for medication.

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