Hello loves, we are here yet again for another#DisabilityQ&A 🙂
Today we have the lovely Anni, I’m sure a lot of you Spoonies out there I can understand and appreciate what she shares with us in her Q&A.
Tell me about yourself:
Hello, I’m Anni and 30 years old. I live in Somerset, UK. I am a professional tea drinker and admirer of purple.
My hobbies: I’m very creative so when my energy levels allow I like to scrapbook and paint. I’m also really into Photography and I’m a *slight* planner addict!
Now we know the basics, can we learn a bit more about you?
What is the medical reason you have a disability?
I have an illness called M.E. which I haven’t been given a specific medical reason for. I also have Fibromyalgia and Generalised Anxiety Disorder.
Have you had your Illness / disability from birth?
Do you refer to yourself as a person with a disability? If not, why not?
It depends entirely on the context. If I’m going somewhere that needs to be accessible for my wheelchair then I’ll get in touch with the company just to let them know that I have a disability and ask about disabled access, but for the most part I don’t like describing myself as someone with a disability – not because I’m ashamed, but because it shouldn’t make a difference to how people treat me.
Do you tell others about your disability? Or do you prefer to keep that to yourself until you are comfortable with the person knowing?
It depends entirely, but I do find myself always apologising if I can’t do something quick enough or I accidentally bump into people because of my co-ordination, and I do tend to say ‘Sorry, I have M.E. which means that I struggle to do some things more than other people.’ I have a guilt complex so I probably apologise more than I should and sometimes it can come across that I’m apologising for having a disability.
Do you use any mobility AIDS such as a wheelchair or walking stick?
I use a wheelchair when out and a walking stick for very short distances.
If you could extinguish your disability, would you? – If not, please explain why.
Definitely! I’m 30 but I feel like I’m 90. I’d love to be able to run around with my kids or go out and not have to think about how it will affect me for weeks to come. M.E. affects all the body’s systems so if I could wave a magic wand and it be gone, then I wouldn’t hesitate at all.
For those who do not know much about your disability how does it affect your mobility?
M.E’s typical main symptom is fatigue which means that I get exhausted very quickly and by doing the smallest of things – like being in the garden, for instance. I can’t physically walk that far as I get so exhausted and in pain. It also causes weak legs for me so they buckle from under me.
How has your disability effected you?
*Socially – Well, I’m practically a recluse! I don’t have any local friends. All my friends live in my laptop, but as someone who also has anxiety, I’m not sure how I’d cope in social situations if I did have local friends. I have made a lot of online friends though who also have the same illnesses as I do so that’s a major silver lining.
*physically – I’m exhausted all the time, in pain a majority of the time, I get severe brain fog that I forget what I was going to say after saying the first word, amongst many other symptoms!
*Mentally – I’m a lot wearier than I used to be. M.E. is an illness which can become very waring. There have been many times where I’ve felt useless because I can’t help with things around the house or it’s affected my self-esteem because I haven’t been able to have a bath or brush my hair. Birds nest, anyone?!
Do you think your disability has made you who you are today?
I think it’s made me appreciate those I do have around me more and made me more tolerable of other people because I know how upset I get when people aren’t tolerable of me. I’d like to say that it’s given me a more positive outlook because I now find enjoyment in the little things I can do.
Is there a particular question you get asked often because of your disability? If so, please explain below.
People can be quite ignorant of M.E. so they tend to ask things like “Isn’t that just like being tired?” but it’s not. It’s extreme exhaustion amongst many other symptoms.
What are the positives of having a disability?
I struggle to use the kettle so my husband makes me tea, and he makes the best tea ever!
What are the negatives of having a disability?
People tend to forget that even though I’m in a wheelchair, I do still have a voice so it would be nice to be spoken to instead of cashiers speaking to my husband just because he’s pushing me. I’m the one who put the goods on the counter and paying, not him!
What would you say is a difficulty for you being disabled?
Not being able to do all the things that I want to do. It’s a case of ‘the mind is willing, but the body isn’t’ and that is extremely frustrating.
As a person with a disability, what are the things you face on a daily / weekly basis that frustrate you?
*In your home – As I said before, I don’t have the best co-ordination so I’m always walking into door frames or tripping over chair legs!
*outside your home – The amount of buildings that still aren’t disabled friendly is astounding. I’ve been in a few that have steep steps up to the door and no access to a ramp. My husband has to lift me up in my wheelchair, which is painful for me and painful for him. Also, shops where the aisles are way too small to even contemplate getting a wheelchair through, and it’s not through lack of shop floor space. It’s through lack of careful planning!
Are there any tips or tricks you use in daily life you’d like to pass on to another disabled person?
*Remembering to take medication? Those little pill compartments are a godsend!
*Organizing appointments – I have a Happy Planner which I decorate and out my appointments in. I find that if I pretty it up, I’m more likely to open it to look at when my next appointment is.
Do you use Assisstive technology in your daily living?
My husband bought me an Amazon Echo for Christmas, so I’ve linked it with my Google calendar so I just need to ask her when my next appointment is and she’ll tell me. Genius!
What piece of advice would you give to someone newly diagnosed? Or going through a deterioration in health / or mobility? Don’t be afraid to talk about it. Everyone was newly diagnosed at some point and it can be overwhelming when you feel alone. There are loads of groups out there for people just like us and there is a massive support network so don’t feel afraid to reach out and talk to others who will understand just what you’re going through.
Any advice you’d like to give to a person with no disabilities?
Tolerance! Seriously, being tolerant to someone with M.E. is one of the best things you can be. We know we can be annoying when we’re in our wheelchairs and can’t go as fast as you like, or you’re stuck behind us in a queue because we can’t walk as fast as you to the counter, but being tolerant and still smiling at us can really make all the difference.
Did you seek out any specialist services / charities to help you and your family deal with your situation?
When I was newly diagnosed, I was in my early 20s so I used a service called AYME which is for young people with the illness and I met a lot of people through that who are now my good friends. Apart from that, it’s just the usual forums that deal specifically with people with chronic illnesses.
Where can people find you out in the world?
*Twitter – http://www.twitter.com/xxMarvelGeekxx
*Instagram – http://www.instagram.com/Annimousey
*Pintrest – http://www.pinterest.com/Annimousey
❤❤ Thank you so much for taking the time to be interviewed Anni! I can definitely empathise with the severe fatigue that comes with chronic illness. And like you I’m still gobsmacked at the lack of ramps and accessible support systems in today’s Society! ❤❤
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