Fighting Adrenal Insufficiency One Day At A Time
I’ve been diagnosed with Adrenal Insufficiency now for just under 5 years and sometimes I wonder where the time has gone. I wonder what might have been had I not become sick and unwell. I wonder how different my life might be if I was a healthy adult, a healthy mum and a healthy wife.
At the moment I am feeling quite low. It’s been a tough couple of months. Ever since my trip to London about 5 weeks ago I have been incredibly unwell. Each day I’ve struggled with sickness, feelings of nausea, pain and exhaustion. Yes I write this blog The Inspiration Edit as it’s the one thing which keeps me going when things get tough.
However I am sad.
My health has deteriorated in the past month and last night my husband said to me, “this is the worst you’ve been in two years, your as unwell as you were before you got the adrenal pump“. I burst into tears. The reality hit me like a ton of bricks. I couldn’t fight back the tears and I had a good cry.
I try to be strong. I try to be brave and I try to be happy in the circumstances I find myself in but it is currently really difficult and I am really struggling.
I have seen a Doctor and am going to see my GP in 5 days to arrange a whole lot of tests to find out if my cortisol levels, parathyroid, vitamin D, Iron and other chronic conditions that I suffer from are out of wack.
Something certainly is not right and it’s affecting my Adrenal Insufficiency and I am suffering from stabbing pains and dizziness regular. I even struggle to walk at times and life has gone downhill for the time being.
I have been doing a lot more sleeping than usual. In fact I have slept a lot in the day and in the evenings and at night and I still need more sleep. I am utterly exhausted and it can put me on edge emotionally, making me want to break down and cry. I will be strong and will get through but I know this is going to take months to recover or get back to my “normal unwell”. It’s not going to be easy.
I have a mixture of feelings
Sadness – I feel sad that this is happening to me. I feel sad that I am so unwell, that I feel so crappy each and every day and I feel sad that it is affecting my family.
Guilt – I feel a little guilty because my Adrenal Insufficiency is affecting my ability to do the everyday things I need to do as a mum and homemaker. My husband is having to do a lot more. I am now getting some support on a weeknight because of how weak and tired I am. I feel guilty that I am not going to church with my family, something I love to and want to do. I feel guilty that I am not doing as much with my daughter as I was a few months ago.
Anxiety – I am worried. I am not suffering from serious anxiety as in the General Anxiety Disorder but I am worried and anxious about my health and about what is causing me to feel so unwell. I feel worried about how this affects my ability to earn money to pay for my adrenal pump medication and I am worried about these things.
Disappointment – I feel really disappointed about the things I am currently missing out on. I am back to being housebound. I am not well enough to go to my weight loss group any more and yesterday accepted that until my health improves, that is going to have to wait. I feel so so disappointed that I can’t go for little walks outside right now. A few weeks ago I managed to take Sylvia to the park but right now that is not an option. I have been planning to go to London in May but I have to face the harsh reality that I am not going to be well enough to make the journey and as disappointing as it is, I just can’t go.
Anger– I feel angry. I feel angry with a carer who has been coming to give me support with some housework. It’s a long story but she has been anything but professional. I feel cross with her because she is supposed to be there to help make life easier but instead has caused me more stress.
Rather than accept I am unwell and see life for me as it is, the person visiting my home on a week day seems to think I am okay. She does not understand how unwell I am and when she comes to my house she constantly tells me I need to get out in the fresh air and go walking suggesting it will make me feel better.
She treats me like someone who is depressed and miserable rather than chronically unwell. She seems to think I don’t want to go out and that I’d rather stay home and sleep or go on the computer. The reality is I would love to get out. I am sad and have feelings but I am not depressed and I am not (not doing things) because of depression. I am not doing things because it makes me feel dizzy and sick and more unwell. I have to pace or I can’t meet my daughter’s needs after school. That is my priority.
Yet my support worker continues to say that I need to go out and enjoy myself and telling me how much I need to lose weight. (She is a lot bigger than me) and that just bugs me a lot. She also talks all the time about her problems and stresses me out. She even asked me to build her a website and run her social media to advertise her caring company. As if I could do that when I can barely keep on top of my own blog work.
I guess this is my online space and it’s my chance to get things off my chest. I’m just so sick of being sick and so sick of being misunderstood. I’d like to get back to how I was. I want to go to the park for more than 10 minutes and walk with my family and do things but I’m heading in the direction of the wheelchair again and that’s not fun!
I think the problem with my support worker/carer is that she can’t see my condition. My illness is invisible. I know she wouldn’t tell someone with cancer to get out and walk, or tell someone with a poor immune system to go places to mix and mingle with others. The reality is when I do go places I get sick very fast and catch everything so I need to just focus on getting stronger rather than catching bugs and viruses.
I need to change the support team who are helping me out. It’s a small team and there is no way to change the person who is coming to my home to help unless I use a completely new agency. Finding regular support is not easy and would take a lot of effort, phone calls, paper work and meetings but it’s something I will attempt to do in the coming weeks.
I do feel sad at the moment. I’ll be telling my friends that I am not coming to London in May. It’s not the first time I’ve cancelled plans, I make lots of plans and cancel more than I don’t but for now this is how things are. Sometimes you just have to say how you feel and today I am doing just that.
Everything that is not important is going to have to go on hold. I still have to blog, we need an income and to cover the cost of medications and I still have to be Mum but weight loss and other goals have to go on hold as it’s all too much for me right now.
I know it may be hard for those who are not unwell to understand being unwell each day. I guess with my carer she simply doesn’t get it. So many people see me once in a while and tell me I look great. It’s lovely to hear but I do not feel great inside. I do share my life online, the things I make, my rock stones and fun ideas but that is just a small snippet of my life, one hour of the week that I felt good enough to do something and I guess only certain parts of one’s life is really shown online.
I know I will always be unwell for the rest of my life, but hopefully we can get on top of what’s going wrong and making me more unwell than usual and we can make life a little more bearable by the second half of the year. I really do hope so.
I will end by saying I am a Super Mum with Adrenal Insufficiency and I’ll keep fighting to get my health right. I am just sick of being extra sick and I think I am entitled to feel that way. I’ll keep fighting Adrenal Insufficiency one day at a time.
Something that did make me happy this week is that I got a new design for my blog and a new picture of myself with my Adrenal Insufficiency cape on. It cheered me up and maybe I can use this to spread the word a little more about AI and how it affects me as an individual.
Well I’ll leave it at that for now. I just needed to say how life is and let it all out and I feel much better for it. I’ll keep doing my best to be strong and fight this difficult period and hope things pick up in a few weeks or months.