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WEGO Health Advocating for Another Carnival: These are a few of my favourite things!…

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Welcome to the second post in the WEGO Health Blog Carnival. Today’s prompt says the following:

List time! Write 5-10 of your favourite things about your health community. Celebrate their uniqueness and be sure to tell us why those are your favourite things.

Today’s prompt asks us to reveal a few of our favourite things regarding our health community in a Sound of Music style!

What would be some of my favourite things regarding my health community as a whole?

Well number one would definitely be that I feel the community that I am a part of is that the people are much more understanding and less judgemental. Living with an invisible chronic illness makes you far more understanding of others and their circumstances, and less judgemental of certain behaviours or symptoms exhibited which healthy people may see as being odd. This is a really positive attribute not only for health activism but for life in general. And I believe that living with a chronic illness also teaches tolerance. Often people are suspicious and fear those who are different to themselves, those who are not congruent with the image that one holds of themselves. However, those who are chronically ill or disabled are brought together with an understanding of the difficulties experienced and which cannot be broken by those which more commonly divide – such as colour of skin, race, nationality, gender and so on. We are our own community, our own little family.

Another thing I love about the community is having to use time effectively – I used to procrastinate all of the time, always putting off chores until tomorrow. But now, as I never know how I will feel from a day-to-day basis I need to complete chores or tasks that need to be done when they arise, as I may not able to do them tomorrow. Also, comes in handy when I am able to go shopping – hated those days when Mum and I would spend endless hours trawling through different stores. This for me, and many others is now longer an option, so now am only able to go in and get what I need as quickly as possible, not wasting any time and not depleting my minimal energy. Then I have more time to spend on the things that I love (and able to complete without pain or fatigue) such as reading, writing, or simply watching my favourite feel-good film. Having time for ourselves is so important when living with a chronic health condition, important for our psychological well-being and great to do something that we enjoy during periods of remission or feeling well.

Another thing I love about my community is how everyone now embraces technology and social media. These new technologies and social media sites such as Twitter and Facebook, allows us all to stay connected with each other, posting comments of support through the bad times and send congratulatory messages during the good times. Many people assume the Internet is used for bad, and is a force for negativity and evil, such as ‘trolls’ sending messages of hate to others. However, the Internet can be used for good, it can be a positive form of communication. For me, and many others within the health community, going out of the home proves to be very difficult and so using the internet and the different social media that exists as well as support forums makes it possible for much-needed social interaction. And has an even more beneficial use if you take into account rare conditions such as mine, in real-life it may be very unlikely to meet anyone with the same condition but the Internet may make it possible to connect with the same condition. One group I participate in even uses Skype for group chats with members, which brings us all closer together and provides a more interactive experience.

The next point, I would say I love is being able to gain practical support from my health community. Often I find myself not knowing the best solution to a problem that I am experiencing; so asking others and brainstorming ways around the problem to find an effective solution which may even lead to more productive and independent life. And another great thing about being involved within the health community is the reciprocity – learning different tips and tricks on how to cope and overcome different obstacles and passing these onto others! Sharing information is so important in terms of health advocacy.

And the last thing what I love and think is great about my health condition – is that we are all unique and special in our own ways. Just like a snowflake, no two patients are alike and each exhibiting a different set of symptoms. Everyone is beautiful and special.

Hope you enjoyed the post – feel free to leave any comments….

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WEGO Health Advocating for Another Carnival: Inside a Fishbowl Post

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Welcome to the first post of the week-long carnival hosted by WEGO Health.  This special writing carnival focuses on health activists who dedicate their time advocating for someone else.

Today for the first post I have decided to use one of the bonus prompts given.  The reason for this is that today’s prompt asked to provide a descriptive portrait of the health community and to provide an image.  However, as, I have mentioned before, the condition which I suffer from is an invisible, therefore, even I were to provide a descriptive portrait of the health community it wouldn’t shed light on the condition.  In addition, as the condition is neurological in nature, it means that not every patient is the same, each unique and each exhibiting different symptoms.

The bonus prompt I have decided to use is entitled ‘From Inside the Fishbowl’ which asks:

People think that they know what your life is like – but appearances can be deceiving.  Write a paragraph about what your life looks like from the outside looking in – then write a paragraph about what it’s actually like from inside.

So, if I and others like me in the wider health community were to be placed inside a fishbowl, seeing what my life looks like from the outside looking in they may come to the conclusion that my life was pretty great.  Maybe they would conclude that there isn’t much wrong, I look ‘normal’, and am able to walk, talk, able to complete chores around the house.

However, as with all invisible chronic health conditions, the daily struggles and the symptoms with which I experience on a daily basis cannot be seen, they are invisible to the naked eye.  If these were visible, people would be able to see the overwhelming fatigue that I often experience especially in the evenings, often needing to change into a comfortable pair of pyjamas before 7.00 p.m.  The dizziness and imbalance that I constantly feel would be visible, the imbalance being characterised by the swaying back and forward that I experience when standing, legs visibly shaking also.  It would also not be known that due to the spastic paraparesis that I suffer makes my legs feel incredibly stiff and weak, leading to the giving of way of legs, falls experienced on a regular basis.

If my life were visible inside a fishbowl, I hope people would understand how the condition in which I suffer has a negative impact upon all areas of my life, and how even though I may look fine, it is not often the case, instead feeling unwell the majority of the time – dizzy, my whole world moving and shifting.  It would clearly be visible all the problems faced in terms of the mobility – the weakness in the legs, the trembling sensations that I feel, making them feel as if they are constantly shaking whenever I am standing.  The tiredness I feel the majority of the time – the constant state of fatigue drowning me.  Hope it just goes to show that appearances can be deceptive, and although a person may appear healthy and ‘normal; it may not necessarily be the case.

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Weekly Photo Challenge: Merge

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Have to say, that this week’s challenge was a tough one!! According to the dictionary, merge is defined as ‘the combination or cause to combine a single entity’ or ‘to blend gradually into something else so as to become indistinguishable from it.’

The following photograph was taken by myself during a holiday to Devon during a long walk (when I was able!) with Mum and the dog and thought it was the most beautiful view! I love how the landscape and the sea merges together so you are not able to see where one ends and the other begins!

 

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In Chronic Illness

Did you Know?…

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Did you know that September 10-16 is ‘National Invisible Chronic Illness Awareness Week’?  Well, it’s based more in America, but still there are plenty of ways that people living in other parts of the world can participate – there are even going to be online virtual conferences to learn more about invisible chronic illness and connect with others.  To learn more about ‘National Invisible Chronic Illness Awareness Week’, you can visit the website at:

National Invisible Chronic Illness Awareness Week Homepage 

As part of the Awareness Event, those running the event have shared ’30 Things’ Meme to share with others what it is like living with an invisible chronic illness – especially as many often exclaim “Nobody understands me!”  This therefore, is an excellent opportunity to educate others so that people will learn to understand!

THINGS YOU MAY NOT KNOW ABOUT MY CHRONIC ILLNESS 

So here is my ’30 Things about my Chronic Illness’…

1. The illness I live with is…  Long-Standing Brain Stem Lesion and Spastic Paraparesis

2. I was diagnosed with it in the year… 2010

3. But I had symptoms since… The stiffness in my legs I have experienced since I was born although due to no diagnosis and no awareness that there was something wrong always thought it was normal!!  The dizziness and vertigo began around the age of 8

4. Te biggest adjustment I’ve had to make is… Learning to pace myself, take regular breaks to sit down so that my legs do not give way.  For example, do chores in small chunks whereas I preferred to complete them all in one go before my symptoms became worse

5. Most people assume… That because I look ‘normal’ that I must be healthy, whereas the reality is that I often feel extremely unwell, the dizziness being constant and often feeling incredibly nauseous and weak

6. The hardest parts about mornings are: The incredible weakness and fatigue that I feel, sometimes it feels as though I haven’t had any sleep at all

7. My favourite medical TV show is… It has to be ‘Grey’s Anatomy’ – would be much more fun attending hospital appointments if all doctors were as good-looking as they are at Seattle Grace Mercy West!

8. A gadget I couldn’t live without is… Has to be between my iPhone or the Life Line alarm I have had installed – due to the weakness in my legs it means they often give way and so have a significant number of falls and so with these gadgets it means that I can easily reach somebody to help me.  The iPhone also helps me keep connected with others when I am too unwell to get out of bed to go on the computer

9. The hardest parts about nights are: When the dizziness is so bad that I cannot get to sleep, sometimes it has been so bad that I have had nights where I have had no sleep at all

10. Each day I take __ pills and vitamins… Every day I take 5 pills (sometimes more when the vertigo is severe I took one to help stop it and ward off nausea)

11. 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

12. If I had to choose between an invisible illness or a visible illness, I would choose… An invisible illness could be more positive in the way that people are more likely to treat you as everyone else

13. 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

14. People would be surprised to know… Despite all my problems I still like to give back to the community and volunteer my time at a local mental health resource centre, which allows me to help out in any way that I am able.  It’s much flexible than a paid job, as if I am really unwell there is no pressure on me to attend

15. 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

16. Something I never thought I could do with my illness that I did was… Probably graduating university and attaining a degree in Psychology.  It was a lot of hard work and draining physically but had a lot of help from the University itself to be able to achieve this

17: The commercials about my illness: There are none really as it is rare; have not met anyone else with the same condition! I would say that it is quite similar to MS

18. 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

19. 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

20. A new hobby I have taken up since my diagnosis is… Using an exercise machine called ‘Aeropilates’ it gives me the opportunity to take part in cardiovascular exercise whilst lying down without worrying about suffering any falls.  Another hobby is writing this blog, something I wouldn’t have done if it wasn’t for the illness

21. If I could have one day of feeling normal again I would… Go on a big shopping spree!

22. My illness has taught me… As I was misdiagnosed with suffering from anxiety before being diagnosed with the neurological condition, I therefore have learnt that doctors are not always right and that if we feel that there is something wrong than we should find an understanding doctor who listens

23. 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!!

24. 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.

25. My favourite motto, scripture, quote that gets me through tough times is: “Every day not be good.  But there is something good in every day” – So true!

26. 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

27. 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

28. The nicest thing someone did for me when I wasn’t feeling well was: Sending me a lovely present in the mail to cheer me up.

29.  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

30: The fact that you read this list makes me feel: Positive and that I have helped the cause; and that I have successfully made people more aware of the impact of invisible chronic conditions.

Thank you for reading my answers to the questions!  I would love to know your thoughts on any of the subjects raised by the questionnaire.  Please feel free to add any comments below.  If you would like to connect with me privately, you can now email me at the following email address!:

brainlesionandme@gmail.com 

 

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Weekly Photo Challenge: Wrong

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There are many definitions of wrong.  These include:

a) not in accordance with what is morally right or good

b) deviating from truth or fact; erroneous

c) not correct in judgement, opinion, method, etc

d) not proper or usual;  not in accordance with requirements or recommended practice

e) out of order; awry; amiss

Many people make false judgements based on appearance, colour of skin, race, gender and so on.  Below is a picture of me on a night out:

Looking at the picture you might assume that I am healthy, that there is nothing wrong at all in my life.  However, this would be wrong…

This was taken on a rare night out; usually I am too unwell to go out in the evening; instead putting on a pair or pyjamas and watching television cocooned in my snuggie.  Often my legs are far too weak to be able to enjoy a good night out, too dizzy and sick to sit in a restaurant with lots of stimulation surrounding me.

This is also a problem with the disability benefits assessments; too many false judgements are made; on one occasion where I had failed a medical, the report commented on how I looked well, dressed smartly.  So, does that mean that just because I suffer from a chronic illness and am disabled that I cannot dress in nice clothes and look smart?  Seeing me for approximately 20 minutes which mainly involves sitting down, that made a judgement that I was able to walk a certain distance, where in reality it was completely inaccurate, instead my legs give way and left unable to walk very far.

I think it is an important lesson for us all; not to judge people on a first meeting or just by looking at them – as the saying goes ‘When you assume , you make an “ass” out of “u” and “me”! 

Love to know your thoughts and comments – what does the word ‘wrong’ look like to you?

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