30 Things About My Invisible Illness You May Not Know 2014...

30 Things About My Invisible Illness You May Not Know 2014…

Sep 09. 2014

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I originally completed the ’30 things you may not know…’ meme back in 2012. However, I thought it might be fun to complete these 30 questions again, not only to meet new (and old!) fellow bloggers but to also see how my answers have changed during the past two years. It is true that as my condition has progressed and am now have the need for mobility aids such as a crutch and sometimes a wheelchair, my condition it could be argued is no longer invisible. To some extent this may be true, however, I have also found that when I do use these mobility aids I do so with suspicion from others because I look ‘fine’ and in their minds I have no need for such assistance. It’s as if they are expecting someone with a legitimate illness or disability to have a specific mark, branding them as such. It therefore does raise the question about what exactly defines an ‘invisible illness’ doesn’t it?

The illness I live with is…
A neurological condition known as a long-standing brain stem lesion, as well as spastic paraparesis. However, there is some debate that there may be more going on and therefore am going through tests and seeing more consultants to determine this.
I was diagnosed with it in the year…
2010
But I had symptoms since…
As long as I can remember, I am certain that I have had the stiffness and weakness in the legs since birth but went undetected for so long because I hadn’t realised that there might be a problem with my legs as I never knew anything different! The vertigo and dizziness started in early infancy also but the exact age I am unsure of but I was very young.
The biggest adjustment I have had to make is…
Accept the limitations regarding my mobility and accept my need for a wheelchair. I am often incredibly stubborn and will refuse to use my wheelchair, and by the end of the day I am in a lot of pain as well as having trouble moving around because of severe weakness in the legs.
Most people assume…
That because I am able to stand and walk sometimes when I have the wheelchair then it must mean that I am faking it all for sympathy or because of laziness. Many people need to learn that because a person uses a wheelchair does not automatically mean that they are entirely dependent on one.
The hardest part about mornings are…
It has to be getting up out of bed! Fatigue is another symptom that I suffer as a result of my condition and therefore it is very difficult to get out of bed as I still feel so tired.
My favourite medical TV show is…
It’s still has to be Grey’s Anatomy, although I am also addicted to Private Practice!!
A gadget I couldn’t live without is…
This is a tough question as like most people I own several gadgets which are all so useful in my daily life living with chronic illness. But having to choose just one I would have to say my smartphone (Samsung Galaxy Note 3) as I am able to do so much with it and can be with me wherever I go. For instance, thanks to applications such as Facebook, Twitter, Instagram and Pinterest I can work on things related to my blog and keep in contact with fellow spoonies, which is fantastic on days which are struggle and need someone else to talk to. More than this I can take photographs, be reminded to take medications on time, play games, watch videos or listen to music – generally be entertained and distracted from pain, dizziness, and life from a chronic illness in general!
The hardest part about nights are…
Trying to switch off from the pain and trembling that I experience in my legs due to the spastic paraparesis. I often experience insomnia because of these symptoms and it’s even been known to wake me up!
Each day I take __ pills and vitamins…
9 pills
Regarding alternative treatments I…
Do not use any, as in my case the condition is not treatable even with conventional medical treatments, only can attempt to control the symptoms. I did enjoy a lovely and relaxing massage whilst on holiday earlier this year which I did find help with the pain
If I had to choose between an invisible illness or visible I would choose…
An invisible illness could be more positive in the way that people are more likely to treat you as everyone else
Regarding work and career…
I would love to have a career and full-time job but often worry if anyone would hire me due to the amount of time that I am unwell and also would question if I could hold down a job due to my legs giving way a lot and the inability to stand for long. Am also not allowed to drive due to the severity of the dizziness and vertigo, and public transport is not an option as it requires standing for a significant period of time
People would be surprised to know…
That despite living with a neurological condition and dealing with severe symptoms everyday that I still manage to be positive! Many people expect me to be depressed because I am stuck inside of the house for most of my time, and so am surprised that I am positive and upbeat. Also, a lot of people love my positivity board which contains letters from friends, cards and posters with positive quotes and photographs of happy memories, all of which help me stay positive.
The hardest thing to accept about my new reality has been…
I am not like everyone else my age and cannot achieve the milestones that I was once looking forward to, passing my driving test being one. Another example, is going out at night with friends, which I am unable to do due to the weakness in my legs, as well as the intense fatigue I experience at night. It has also been hard to accept that I may need to use a wheelchair as my legs keeps becoming worse over time.
Something that I ever thought I could because of my illness which I did was…
It has to be going on a cruise. Not only did I think it was out of my reach due to the severity of the dizziness relating to my neurological condition, but also I never expected me to be able to handle it, but I did and looking back the holiday was a fantastic experience, and between you and me we have just booked to go on another one next year around the Canaries!
The commercials about my illness…
Are non-existent as the condition is rare. In fact it is so rare that I haven’t met anyone else with the same condition.
Something I really miss doing since I was diagnosed is…
Going on shopping trips with my Mum to our local city centre (Cardiff). Since my legs have become so much worse am unable to go as a lot of walking is involved as well as not being able to queue in the big department stores as my legs often give way. Also, large cities such as Cardiff can be very difficult for me to handle because of the dizziness, as it makes me very disoriented due to the large crowds, fluorescent lights in the shops and high ceilings and so on.
It was really hard to have to give up…
Doing all the exercise that I enjoyed such as going on my exercise bike or going on walks as not only is it beneficial physically, I often found it helped with mental well-being. I also miss walking my dog as it’s something that both her and my Mum and I enjoyed doing together.
A new hobby I have taken up since my diagnosis is…
Blogging and writing. If I had not ben diagnosed with this neurological condition then I would never have started blogging or meeting all of the wonderful people I have as a result of my writing. I also never would have had the opportunity to contribute to the inspiring digital magazine ‘The Pillow Fort Magazine’ especially for those battling with chronic conditions.
If I could have one of feeling normal again I would…
Spend the whole day out of the house with dinner afterwards and maybe headed to a party after that!
My illness has taught me…
To listen to my body, and that we all know when there is something wrong. To never settle when doctor’s are telling you there is nothing wrong when you know there is. To keep moving forward and to never give up until you find a doctor that will listen and is determined to find out what is wrong.
Want to know a secret? One thing people say that really gets under my skin is…
“There are people much worse off than you”. Yes, I understand this but it still doesn’t help!!
But I love it when people…
Listen to me and tried to understand even though it can be difficult due to the unpredictable and unusual nature of the illness.
My favourite motto, scripture, quote that gets me through tough times is…
It has to be “Life isn’t about waiting for the storm to pass but learning to dance in the rain”
When someone is diagnosed I’d like to tell them…
It is not the end. You still have a lot to offer just need to be open to new opportunities. You need to find a new normal instead of focusing on the past and everything that once loved doing but can no longer do.
Something that has surprised me about living with an illness is…
Although that I do not know anyone else with the exact same condition, I am still not alone. There are many other people who experience the same struggles as myself and whom I can learn from and can support each other through the tough times.
The nicest thing that someone did for me when I wasn’t feeling well was…
Sending me a care package with things that I love and a beautiful card to add to my positivity board
I’m involved with ‘Invisible Illness Week‘ because…
To spread awareness of the difficulties faced when living with a chronic invisible illness; to educate people that although you cannot see the problem does not mean that it doesn’t exist. That people with invisible illnesses are not faking or are lazy and that we should be careful when making snap judgements about people. It’s a cliché but it’s true: ‘You cannot judge a book by its cover”. It would also be nice to connect with others living with invisible illnesses like myself for support and friendship.
The fact that you read this list makes me feel…
I feel validated and supported so thank you!!