Welcome Everyone to another edition of ‘My Brain Lesion and Me’. A new post for a new day of the WEGO Health Activist Writer’s Month Challenge, in which I have been writing a new post every day throughout the month of April. Today’s prompt reads the following:
5 Challenges & 5 Small Victories…Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.
My 5 Challenges:
- The fact that the condition is invisible, unable to see the suffering that I go through or when everyone presumes that I am healthy because I look ‘normal’. Especially when going to see doctors and consultants, sitting there and having to justify why you have taking up an appointment to see them as you look fine and healthy. Having some doctors not believing the symptoms that I am experiencing are real, and using the “it’s all in your head” excuse when they can’t find an explanation for the symptoms
- Not being able to make plans – It’s very hard living with a condition which fluctuates between ‘not feeling too bad’ and able to function on some level and ‘feeling absolutely terrible’ and being hold up in bed, feeling as sick as a dog! And as I am unaware of how I am going to feel on a particular day or not knowing when symptoms are going to arise, it makes it so difficult being able to make definitive plans on going anywhere. Am unable to book those tickets to see a concert that I want as I do not know how I will feel on that day, and so on. And as you cancel plans on going out with friends, they soon stop calling and asking, and then are left with feelings of loneliness and isolation, even as if your friends are ostracising you, as if your condition is somehow contagious.
- Not being able to leave the house unaccompanied due to the risk of injury or the onset of an attack of vertigo. This is particularly hard, especially as friends have come and gone in my life, which only really leaves my parents taking me to places where I may want to go or need to go. And of course they both need to work, leaving me the majority of the time being stuck in the house alone, lonely and depressed without company.
- The weakness and unpredictable nature of my legs – As I have previously mentioned due to the spastic paraparesis, my legs are incredible weak and tend to collapse from under me with no warning, and also means that I am unable to stand for very long. This means that if I am going out anywhere, it can really only be for only a short period of time, or if I am going out for a while for any reason, I need to take regular breaks to sit down in case of a fall and to prevent an injury occurring.
- Being reliant and a ‘burden’ on other people. I would love to be much more independent and being able to do much more things for myself. There are so many ambitions and little things that I have wanted to achieve such as passing my driving test, which I am unable to do because of the condition.
My 5 Small Victories:
- The friends that I have made on Social Networks such as Facebook and other support groups. These amazing people have really kept me going through the dark and painful times in my life. I live for the meetings on Skype, where we discuss our conditions and how we are feeling, picking those up when they are down and celebrating our achievements. They have become like a second family to me, and are all amazing and special people. It’s also amazing to have people there who can relate and know what I am going through and reminds me that I am not alone.
- Being able to achieve little goals such as doing some chores around the house for my Mum, or doing a little bit of cooking for myself, is at times a major achievement for me as I often feel so unwell, and often having to battle through especially when I have the tremors in my legs, making it so difficult to stand. And is also a great reminder that even though I do have a disability that I still have skills and other things that I can offer.
- Going somewhere new without any problems is sometimes a major victory for me, especially as I often feel anxious about going somewhere new, not knowing what it’s going to be like there, as particular features such as high ceilings, or particular lights can set off an episode of vertigo. It also creates anxiety as even if it hasn’t any features which I find triggers vertigo, I still am unable to determine how I am going to feel once I’m there, or if my legs are going to collapse from under me leading to a fall, which can be very embarrassing in public places with everybody looking.
- Completing voluntary work every week is a small victory that I can say that I have achieved. Even if I feel relatively unwell, or am having troubles with my legs I still am able to push through to go to the Resource Centre, where my voluntary placement is based. It provides myself with the opportunity to leave the house for a few hours every week, being able to talk to new people, and being able to make themselves feel good about themselves or helping them in some small way is fantastic and again is a great reminder that I still have things I am able to offer. It can also be a great way to forget about your own troubles for a while, and to focus on others can be very uplifting.
- My major accomplishment that I have achieved has to be completing my degree in Psychology. Having the problems that I do, made it so much harder to achieve – but I still managed it. Just goes to show that even with a chronic condition as myself doesn’t have to stop you from achieving something that you want from life – I’m unable to drive or even learning to drive but gaining a degree is something that I CAN achieve!!
This has been a great prompt – and has been a great way of thinking differently about my condition and the ways in which it affects me. The Small Victories section and was great at being able to think positively and ways in which we with health condition such as myself can still contribute in the community at large. Thank you WEGO Health!
Again would love to hear from you all regarding your thoughts. What are your Challenges and Small Victories in life?
Dystonia Muse
Rhiann, I feel compelled to add to your list of “Small Victories” your individual posts on this remarkable blog, which is educating the world about your condition and providing support to others. I’m relatively new to the blogging world and had absolutely no idea of the incredible journey I was embarking upon when I began. Each article is a note to the world about our alien lives, helping to build critically needed empathy and understanding. I’m so grateful that we’ve encountered each other and become friends. You are a dear soul. -Pamela-
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