A confession…
I’ve been wanting to write this post for a long time but every time I start writing I lose my nerve and stop. So far I have kept my blog fairly factual because I am scared of being judged however I want to let other people in the same situation as me know that it is ok. I hope to connect with others in the same boat as me and together we can work towards turning our financial situations around.
About me
My name is Lisa. I am in my early 30’s and have suffered from ill health and disability since I was about 16 years old. I have a condition called Joint Hyper Mobility Syndrome (also known as Ehlers Danlos Type 3) which means my joints are very loose and dislocate very easily. I am currently recovering from a badly dislocated jaw. Dislocations and pain are a daily occurrence. I also have a condition known as POTS (postural orthostatic tachycardia syndrome) this means that when I stand up my heart races and I become very dizzy and get exhausted quickly.
Needing to sleep at least 12 hours per day, getting exhausted after simple tasks such as taking a shower and forever trying to heal from joint dislocations has meant that I have been unable to work since I medically retired from my part time job aged 19.
I’ve relied on benefits since then to survive. First Income Support then later Employment and Support Allowance. It isn’t much money and it doesn’t go far but I try to make it work.
I’ve always had dreams of being successful doing high power jobs that pay big salaries. My childhood dream was to become a vet but that became physically impossible. My hands are too shaky so I would not be able to carry out surgery safely. Once I came to terms with the loss of that dream I decided I wanted to learn computer programming, I love computers and code but my concentration isn’t good enough to work on big projects.
The last few years have been spent feeling depressed about my situation and floundering. It has felt like I haven’t achieved anything yet my peers are settling down with families whilst working the 9 to 5.
Realisation
I had been embarrassed to tell people when they ask that I am not working, that I have been ill and rely on benefits. So many people have such a negative view of people that receive benefits, popular television channels have multiple shows dedicated to bashing those who receive government help; it is no wonder a lot of people think this way.
I’ve felt I had nothing to be proud of but then I realised I was judging myself against an arbitrary set of rules. Just because I am not married with two kids and a career doesn’t mean I have failed.
There is a saying “Everyone is a genius. But if you judge a fish by its ability to climb a tree, it will live its whole life believing that it is stupid.” and it is true.
I decided to re-evaluate my criteria for achieving success and really think about what is important to me. I’ve decided that I would be happy with a nice comfortable home, good food and the ability to travel every once in a while.
Permitted Work
However the big thing that is important to me is to be financially comfortable. I will never be able to get a traditional 9-5 job. I don’t know what the state of my health will be from day to day. I’ve spent hours reading blogs about working from home and it seems like an ideal fit for me. My brain seems to come alive in the early hours of the morning, I started writing this post at 1am! I can spend 30 minutes a night answering surveys. It doesn’t pay much but it adds up. I can take that cash and treat myself to a nice hot chocolate and enjoy it with no guilt and a sense of pride at my small achievement.
I’ve applied for and been granted permission to do Permitted Work. This means that I can work on an ad hoc basis. I can earn a small amount of money each week which I get to keep on top of my ESA money. I can use this money to treat myself to life’s little luxuries and a little independence. The good thing about this scheme means that when I’m having a bad week I can rest and look after myself and not have to worry about the finances.
What I would ideally like to do is build up a passive income so that the money comes in weekly whether I’m well enough to get out of bed or not. It seems like a pie in the sky dream but it is possible with a little work. I have to have something to work for, a dream to hold or I might as well just give up and I’m not willing to do that.
The future of My Money Spot
So what does the future hold for my blog?
I want to share with you my tips for saving money on your food bill when you don’t have the energy or ability to batch make a weeks worth of food or when you know its cheaper to buy your salad vegetables separately but physically can’t chop them all up. Disability can be expensive!
I want to share with you various simple ways you can earn a little cash to help cover the bills or treat yourself.
Most of all I want to connect with others in my situation and together we can work on bettering our financial situations.
Thanks for sharing! It’s great that you are looking for creative ways to keep improving and doing things that are important to you.
Thank you!
There is rarely a situation where someone isn’t worse off and one of the very good things you have is your ambition and drive, you can do a lot with that.
I used to be a computer programmer, and yes, you do need to be able to concentrate deeply for long periods. Perhaps apps might be something you can explore? I’m thinking something you can tackle in small chunks as and when you have the energy
It was very brave to reveal something so personal. I wish you much luck
Thank you for sharing your story. It’s so important that we keep reaching out during times like this.
You should not feel bad about what you’re going through, I can’t understand how tough your life must be. My family have a lighter form of Ehlers Danlos where some of us (especially my brother) can cut ourselves quite easily and that is tough enough so I can’t even imagine how tough your type is x
I am really looking forward to reading your future blog posts!
I really believe people with disabilities should be helped by benefits and shouldn’t be judged it all. It’s great that you have that right to work and that you’re working towards new goals. Good luck with them.
This is a very brave post to share, and I applaud you. We are always shown the bad sign of those living on benefits, and not everyone is in that position. I think you’re a very brave lady.