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Recent 5 Challenges and Small Victories

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Welcome to the Health Activist Writer’s Month Challenge brought together by WEGO Health – a social network for all health activists.  Again, I am participating in the annual Writer’s Month Challenge in which I will be writing about my health activism and health condition based upon prompts given.

Today’s prompt reads as follows:

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

Again this is a post that has been part of the Health Activist Month Challenge before; I had thought of skipping this prompt, however, I then realised that life with chronic illness can change overtime and therefore, I have decided to do the and write about the challenges and victories of life with my neurological condition.  I will think of the recent challenges and victories that have been in my life, and without looking at the previous post that I had written and can then compare how my condition has changed over time.

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Challenges 

  1. The first challenge that has been rather large in my life recently is definitely fatigue.  The fatigue recently has been constant and unrelenting.  Often I have no energy, and when I do find the little energy to do things, then I am so shattered afterwards that I find I may need a nap but often that does not help the tiredness that I feel.  After being out with my carer, I often find myself collapsing on my bed, and before I realise I have fallen asleep.  It has also left me with a lack of energy to be able to do the simplest chores around the house, for example, my ironing has been piling up recently as I have had no energy to be able to tackle the pile of clothes there waiting for me.
  2. My legs have also been challenging for me as late.  If I am not battling against the pain, weakness and trembling in my legs then I am dealing with loss of sensation in them.  The last few days the pain and trembling has been particularly bad and therefore makes walking both painful and challenging, but more than that it has also led to several falls resulting in cuts and bruises on my body.  I am unable to stand for very long because of the spastic paraparesis, which in itself is a challenge as it prevents me from being able to chores such as ironing or cooking without the aid of aids.
  3. The dizziness is another symptom which I have also found to have worsened recently, which has made it extremely difficult to go out, especially when needing the wheelchair.  Because the dizziness has been so severe recently, I have had to rely on hats whilst out on trips with my carer.  Wearing a hat allows certain visual disturbances which worsen the constant dizziness I live with, or induces the vertigo to be eliminated from my eye line, therefore decreasing the severity of the dizziness and vertigo. The dizziness has been very severe lately, and because of it I have even had to cut short trips out.  More time has been spent lying down in a quiet room as the vertigo has been so intense; and suppose it has been such a challenge to live with, that I am not living life as I should.
  4. I have needed the wheelchair a lot more recently which is also a challenge; because of the severity of the dizziness just being in the wheelchair feels very uncomfortable due to all of the movement and visual stimuli that I am subjected to.  It seems that recently I have lost all confidence in using the wheelchair, but on the other hand I really need to use it because of how weak my legs are – am often in a catch-22 situation!  It is also a challenge as I am due to go on a cruise in 3 weeks, and will need the wheelchair a lot more, especially when off the ship, visiting the cities which we are stopping at such as Rome and Florence.  It will be a big challenge trying to cope with the severe dizziness and being in the wheelchair at the same time.
  5. Feeling reliant on other people most of the time.  It can be very demoralising when you are unable to do things that once came so naturally, and needing other people to help you.  I wish I could be a lot more independent, and feel so helpless when I cannot even go out somewhere on my own.  It’s very frustrating!

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Victories

  1. I have mentioned this in a recent post entitled -‘I went and I conquered‘ but a recent victory of mine was definitely going into Next, a local retail store and being able to shop in there!  This was a big step for me – because of the dizziness, stores such as Next can aggravate the dizziness and vertigo and makes them a lot worse because of the layout of the store, the height of the ceiling as well as the fluorescent lighting used.  My carer and I have been trying for a long time for me to even set foot in there.  It such a joy, knowing that I can shop in-store, save myself the cost of postage and packing, and even trying clothes on; something I haven’t been able to do for such a long time.  I have since shopped in there several more times since the original blog post and bought several items that I need for the holiday we are soon to embark on.
  2. This actually links in with a challenge listed above regarding the use of a wheelchair.  Yesterday the weakness in my legs was significantly bad, and so as my carer and I were headed to a local garden centre, it was decided that I very much needed to use the wheelchair.  The dizziness was severe, and so I was nervous about using it.  But, I actually was victorious against the dizziness, and managed to stay in the wheelchair and even managed to wheel myself around.  I felt in control whilst using the wheelchair for the first time in a while.  This is a victory as it has really boosted in my confidence at the thought of needing to use the wheelchair on holiday.
  3. I think another recent victory was keeping up with the Health Activist Writer’s Month Challenge especially considering how severe the fatigue has been recently.  It has been difficult to do anything as I have felt so tired but being able to keep up with this writer’s challenge has been a real victory for me as it has been very difficult doing it, but shows that I am able to push through and come out the other side.
  4. One thing that really keeps me going are the networks that I have created thanks to social media.  The friends I have made really keep me going through the dark and difficult times and is always a ray of sunshine, receiving a message of support on a day in which you are really struggling.  I am really proud to be involved with a new online community for those with neurological conditions, and it is the work behind the scenes which at the moment is really giving me a purpose which is a great and important victory especially as living with such conditions can make you feel so dependant on others.
  5. My positivity board is a real victory and one thing that does keep me going despite living with a chronic illness.  A lot of people have contacted me regarding my board, and have even created one for themselves!  I love that I have inspired others and help make someone stay positive through their own illness or troubles.

So, those are my recent challenges and small victories!  To read about what I had written previously then please go to ‘HAWMC Day 27: 5 Challenges and 5 Small Victories…‘

What about your own challenges and victories – have they changed over time as your condition has changed?  Would love to hear your thoughts and suggestions.  Please feel free to post your comments below…

 

 

 

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HAWMC Day 27: 5 Challenges and 5 Small Victories…

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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:

  1. 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
  2. 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.
  3. 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.
  4. 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.
  5. 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:
  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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?
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