I have an Invisible Illness
A friend recently said “you and your husband have the easiest life ever! You get to go to stay in bed all day and your husband does not have to work. You blog whenever you feel like it and get free gifts all the time. You are so lucky”.
As good as the intentions of those words were, I could not help but feel very disappointed, very misunderstood and a little frustrated at the way our life was perceived. This is because I have an invisible illness, a chronic illness which cannot always be seen.
My chronic Illness is not visible. I have not lost my hair, I am not as thin as a rake, I do not have a tube in my nose or a oxygen mask attached. My illness is just as real as other’s but mine it is invisible to the naked eye. My illness is invisible to the everyday man because I look normal and because I look normal and healthy, people sometimes assume I am normal and healthy, yet I am far from this.
I write this blog, Daysinbed.com because I am chronically unwell. I spend 75% of my time in bed. My adrenal glands failed in 2013, they no longer work and I can not produce the life saving cortisol hormone which is needed to maintain a healthy blood pressure and to help control salts and sugars in the body.
This means that even on the best of days I cannot walk more than a few meters without feeling lightheaded and very sick. I need to use a wheelchair when I leave the home. I leave the home for the doctors and for hospital appointments.
My husband who has become my carer drives me to appointments and then pushes me in my wheelchair through the hospital corridors to meet the doctors who are “trying” under the constraints of the NHS to make me well. Some days are better than others and some times I manage to walk on my own but never a long distance or for a long period of time.
My husband cannot work a full time job because he has to physically support me everyday. He also has to take our daughter to school and cook the meals, help with chores and do everything else I struggle to do daily. Unless my friend walked in our shoes, she really would not understand.
I guess one of the good things about being ill is there is less laundry to do. I wear pyjamas a lot of the time. I generally only get changed when we are going out. I do go out for special occasions like our wedding Anniversary. We went out as a family for a meal. I took photos and my family laughed and had such fun but you know what! I felt sick the whole time. I smiled and joined in but my head was banging from the noise of the children’s party that was going on. I felt sick and didn’t even feel like eating. I didn’t tell my family how I felt. I just wanted us to have a good evening out.
Sometimes people assume if we go somewhere I am feeling better. Well, I can count the number of social events I have attended this year on one hand and the reality is I only felt well for one of them and that was BritMums in London. Even then, I remained in the wheelchair the whole two days and rested as soon as we got to the hotel. I also stayed in bed for the whole week before hand and it took two weeks to recover.
Every once in a while I’m prepared to go places because if I didn’t I’d be trapped indoors my whole life and that would drive me crazy. Last week we went to London which was amazing but I did spend 3/4 of the time in the hotel room. I was really lucky to feel as well as I did last week, our time is London was wonderful! We were invited to Buckingham Palace and had hot chocolate in the gardens! What an experience.
Usually if I rest and stay in bed, I feel well enough to do sitting up tasks. For example, I can type or my blog posts, I can design a picture or create a quote and I can talk on social media. of course I’m still in pain, I always am but I fight through it. Pain does make it difficult to concentrate and I can only imagine how much more I could do if I was not so unwell.
As I don’t talk to people in “real life” each day, social media is my way if keeping sane. Twitter and Facebook make me feel normal and I love talking to people. I don’t find social media “stressful” and this does not effect my “cortisol stress levels” It’s one of the things I seem to be able to do with ease!
Discovering my ability to talk on social media without feeling sick and my ability to write blog posts (when I’m feeling well enough) has opened up a whole new world to me, the world of blogging and social media. I Feel like I’ve discovered someone I never knew. I have discovered the real me and it makes me happy.
As unwell as I am, I can chat to people and send messages and it does not make my condition worse. Blogging has improved my quality of life as I am now able to contribute to society once more. I can share knowledge and inspire others and it feel so good. I am able to inspire other mothers, share my knowledge as a previous Teacher and most importantly raise awareness for Adrenal Insufficiency.
Blogging has allowed my husband to work towards his dream of photography while he also cares and supports me. It’s not easy for a man with a business degree to stay home and care for a wife each day but it needs to be done. We could not reasonably afford to pay someone else to do everything that I am physically unable to do.
Blogging has given my husband a second purpose. John helps me with the extra tasks that come with blogging, (the one’s people don’t always think about) such as the techy parts, he has taught me scripting basics and helped me learn how to design and work with photographs. John helps me with my tags and SEO, with advertising and media scheduling. He helps me to deal with “the invisible workload” that readers don’t see. Writing a post is but a small part of blogging.
Being unwell means I have days where I cannot write a post. This is okay as I write in advance when I feel able, in preparation for the days I am simply too unwell. This creates the illusion that I’m writing everyday. I am not. I can’t write everyday, somedays I’m just not well enough.
I do however go on social media everyday, even when I’m unwell because talking to people even when I’m sick keeps me sane! Blogging really is the ideal job for me in my predicament. I can write and talk. I still have my mind, although being unwell does give me brain fog every day. I simply fight through it the best I can.
Before blogging I used the “feeling okay moments” that I had to watch tv and chill out, to read or browse the internet. Now I use this time to work and I work hard. My husband also works hard. We work just as many hours as a 9-5 worker, however our work is split into time slots when I am feeling well enough and John is able to take a break from other duties.
Blogging is hard slog. Whether doing it at a desk or in bed. I have to engage online, respond to emails, deal with PR requests and write posts. I have to plan and research, read other blogs and do techy work.
When I go to hospital, I sit and write lists, I plan, I take photos, I go on Instagram. When Sylvia goes to bed, we don’t chill out like the average 9-5 worker. We do not sit and watch movies. We work! Blogging is not just about writing a post, there is technical work to be done, research, deals and contracts. It’s not easy and I’m sure some people would not bother wasting their time if they knew how much work was involved.
So to the friend who thinks I have the perfect life. I’m sorry you misunderstand me. I wouldn’t wish chronic illness upon anyone. Yes I blog around my illness, but it is no fun feeling sick through the day. It is no fun having to order groceries online when I love to visit the supermarket. It is no fun working all the hours we do but we do it because this will eventually earn us a full time income one day, it will allow us to become completely self reliant and to support, help and inspire others who find themselves chronically unwell.
Blogging will soon help us to pay for my daughter’s dance lessons and to do activities we simply could not afford if I opted to live on a sickness benefits for the rest of my live. Most importantly blogging will eventually pay for my private care to help get me better sooner to help cover the cost of an adrenal pump, a medical treatment I can have when I have raised the money to pay for private treatment.
And to my friend who thinks it is fun to stay in bed all day, it is not! I miss out on so much. My daughter goes swimming with her daddy and I stay at home. They go on a date to the movies and I stay behind. My family go to the park and I usually cant go. I have to pick and choose what I do. It is not fun staying in bed while your husband goes to watch your child’s sport day or missing out on an assembly or the chance to go with your child on a school trip. This is not the life I dreamed of, it is the life I have because of my invisible illness and I am trying to make the most of it!
As or getting free things for blogging. Nothing is free. Anything we get is a result of hard graft. We earn it and we have to make deals and do hard work in the background. Blogging is not “lucky”, it is a work choice and an option available to me when I cannot do other physical jobs. Being ill and staying in bed is not “the easy life”. We would much rather be earning big wages as we intended after getting our degree’s, but we cannot due to my invisible illness. As one door closes another opens and we must make the most of the life we have.
Finally, you say my husband does not work! You are so wrong! My husband works everyday. He does not get the weekend off. He is a full time father and a full time carer. He also works full time in the background of my blog. My husband is one of the hardest workers I know. He drives me to all my hospital appointments. He picks up medications, works on his own blog (yes he too is a blogger as well as a photographer, cleaner, cook, father and carer) and to be honest, he has no time to rest. He barely rests. He does not relax enough. Yet some people assume because my husband is not working a 9-5 job he is lazy and doing nothing! It’s simply untrue.
I am a mother, a wife and a blogger but I am also someone who has a full time illness, a chronic illness, a life threatening illness called Adrenal Insufficiency and my illness is invisible. It never goes away. I hope this sets straight and clears up any misunderstandings about my life and the life of my husband. He is the man who has cared for me everyday for two years, the man who is doing his best to help me build a successful blog from the ground up, the man who works not just 40 hours a week but 80 hours a week, with very little breaks.
I continually get asked when my husband is planing to go to work. I don’t get mad, I understand it may look like we are sitting at home and doing nothing, but that’s simply not the case. The question that should be asked is when does your husband get to rest? and when i’m asked this I will answer never- because I have an invisible illness and it is not going to go away!