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spastic paraparesis

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WEGO Health Advocating for Another Carnival: Challenge Accepted!

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Welcome to the third day in the WEGO Health  Advocating for Another Blog Carnival.  The prompt given was the following:

Leading a community isn’t all sunshine and ice cream – it’s hard.  Write a post that delves into the 3 challenges that you face as a Health Activist

This is a really interesting post, one, which really makes us, reflects upon our role – probably not something that we really think about.

 

One challenge that I particularly face, especially when one considers it is a rare condition – is simply by trying to find an audience for my blog.  Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself.  As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.

 

Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease.  But still the question remains whether my blog is helping and making a difference to others.  Do I have something of value to add and share with whole health community?

 

The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell.  A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity.  Us health activists need to attempt to learn to balance our lives – health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.

 

And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well that it is not always the reality.  And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful.   Some examples of things NOT to say to a person with an invisible chronic condition are:

  • “It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
  • “It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
  • “You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating.  For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others.  For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
  • “Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is

And there are many more!!  Can you think of others that people say to you which are not helpful?  Please share them with us and perhaps I can do a follow-up piece on the topic!

 

 

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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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Summer’s Here!…And worsening of some symptoms??

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Hello, Everyone!

I hope you are doing well and are AWAP (as well as possible!) and I hope that everyone has been able to enjoy the great weather we’ve had (granted, for those of us in the UK, it’s only been a week or so!). Anyway, although it has been delightful to see bright blue skies and the feeling of warm sunshine on my skin, the hot weather and particularly the humidity at night has been playing havoc with the symptoms which I experience.

For example, Monday I had the opportunity to sit in the beautiful gardens at the Centre for which I volunteer, and after only a short time the dizziness and vertigo which I experience daily were incredibly intense, leading to visual disturbances and incredible nausea as well as deep aches and pains in my legs.

And last night was one of the worst nights I have experienced for a while.

It was so warm and humid in my bedroom, and unfortunately for me, I also had a guest in my room – my dog Honey! And believe me, this didn’t help the situation!

Due to the humidity, it was incredibly difficult for me to get to sleep anyway, especially with the cramping and deep pains in my legs, but somehow I did manage to drop off sometime during the night.

Honey looking angelic keeping cool – complete opposite of her antics last night!

But alas, was awoken around 2.30 by the dog, crying and heavily panting – seems I wasn’t the only one that is having trouble with the heat, and hampered by my bedroom which always seems to get very warm.  And after that was unable to fall back asleep due to the severe stiffness and pain in the legs as well as the violent dizziness and so spent the early hours of keeping myself occupied by listening to music and watching episodes of ‘Grey’s Anatomy’ and ‘Once Upon a Time.’

But a question that might you be thinking is why does the heat affect those with neurological conditions so much?

Well, the reason for this is in many neurological conditions the nerves are damaged or the neural pathways which slows the ability of the nerves to function and send messages to the appropriate part of the body.  Heat can further slow down nerve impulse in affected areas such as legs in my case. And this is the reason for increased symptoms during the hot weather.

 

Image: She Radiance.  A Magazine by Ayushveda 

So to ward off increased symptoms and those of heat intolerance it is vital that those with neurological conditions such as in my case, or those with MS, keep cool during these warm Summer nights.

And what steps can we take to ensure that we do not relapse or our symptoms become worse or find ourselves unable to sleep because of them?

 

Suggestions for keeping cool and being able to sleep comfortably on a hot night: 

  • If safe to do so leave a window open in your bedroom to increase the air circulation in the room.  Multiple windows facing different directions to admit breezes is even better.
  • Set up a fan – if you are worried about the noise emitted by fans, consider buying a large fan or even a ceiling fan which tends to move air with less speed and noise
  • If you are unable to open a window, consider using a fan and ice to mimic air conditioning if it is unavailable.  Buy a commercial bag of ice and empty it into a shallow container (to contain the water as the ice melts).  Place the bowl of ice directly in front of the fan (between the fan and you), level with the top of the bed
  • Keep your neck cool! It works the same way as keeping your feet cool.  Try using a cooling pack that works for you, or place a damp towel on your neck
  • Consider using the ‘Egyptian Method’: wet a sheet or bath towel that is large enough to cover you with cool or cold water, and wring it or run it through the spin cycle on a washing machine until the sheet is quite damp but not dripping wet.  Or you can use a spray bottle of water to spray the top sheet until it is damp but not soaking.  Place the dry towel or sheet underneath your body and use the wet sheet as your blanket.  The wet blanket will help keep you cool.
  • During an extreme heat wave take a light t-shirt and wet it, wring it and then wear it.  Evaporation from the shirt will help to keep you cool enough to sleep for a few hours
  • Take a pair of cotton socks and rinse them in cold water, wring them until they are damp and put them on.  The cooling of the feet lowers the overall temperature of your skin and body
  • Chill your pillowcases: put your sheets, blankets, and pillowcases into freezer bags and place it in the freezer all day.  Doing so can help you fall asleep faster, further reducing your exposure to the uncomfortable heat
  • Sleep in a ‘spread eagle’ position, so heat doesn’t gather around you
The ‘Spread Eagle’ Position
  • If it is a terrible night for you, sleep downstairs – warm air rises, so it tends to be cooler downstairs
  • Take a cold shower or bath before bed, or if this is not an option splash some cool water on your head and feet – this will help you keep cool for longer allowing you to fall asleep faster

 

These are some of the examples of keeping cool during those unbearable hot summer nights.  Have you got any other tips?  Please leave a comment with any other suggestions!

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How do you solve a problem like…a high ceiling?

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Sorry for the lack of an update this week – truth be told, I haven’t had the greatest weeks with most of it spent lying on the sofa with the comfort of a quilt and watching endless hours of television (or at least trying to!!) feeling particularly dizzy, weak, nauseous and with frequent episodes of the ‘room spinning’ motion.

It started Wednesday evening and I believe that the deterioration in my condition was due to the afternoon I spent at ‘Life 4 Living’; a local group I attend every week which promotes enjoyment, positivity and friendship.  Don’t get me wrong, I love my time at the group, and is something that I really look forward to, however, this week we had a local singer coming to the group to perform and so we left the confines of our usual room to conduct the session in the Day Centre’s Main Hall.

Now as I may have mentioned before that one of the triggers that seem to affect me much more than anything else are high ceilings.  The very first dizzy spell I experienced was in a DIY Superstore with vast ceilings and being in a place with high ceilings can bring on an attack of vertigo, causing my vision to become out of focus, balance becomes even more unsteady.  I have no idea why these places affect me so much but they just do – if anyone knows any such explanation I would love to know!!  The ceiling wasn’t particularly, much lower than what you would find to expect in a superstore for example, but as there was dips within the ceiling itself – progressing from higher to lower and so on just threw me for a loop – as if it was too much visual stimuli for my brain to process!

Unfortunately for me everywhere and every new store that is opening up seems to be big vast and open as well as the problematic high ceilings – as if the world I live in now no longer is fit for me, a lot of places coming out-of-bounds for me and my condition, nowhere being accessible for people ‘like’ me.

My Nemesis!

We had prior warning to the change of venue and knew what it was like in there beforehand so I was able to bring my Mum along for support and to help me if taken unwell. On a positive note, I did manage to stay in the hall for the entire group session (close to 3 hours) but even so I uncomfortable and unwell the entire time, and my balance was really bad also – thank god Mum was there to get me drinks and to help me get my food from the buffet.  As much as I did want there, I just wanted to enjoy myself with my Mum whom I do not get to go out with anymore on account with the severity of my symptoms as well as the awkwardness of spending a long amount of time out causes due to the weakness in my legs, and Mum was also looking forward to seeing the singer perform so didn’t want to spoil it for her.

The most embarrassing part came towards the end of the afternoon when coming to leave my legs seized up on me causing me to crash to the floor!! But still a good time was had by all!

And since then, I have really gone downhill, legs weak I have hardly been able to stand and generally feeling weak and lethargic – as if those three short hours just took everything out of me.  So here’s to a quick recovery in time for volunteering Monday and especially to the next meeting of ‘Life 4 Living’!!

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One Voice…

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Hello, readers new and old – hope you are all well.

Or much better than I have been lately anyway – it really hasn’t been a great time for me, with legs giving way much more, becoming weaker, even leaving me in bed for a whole day a couple of weekends ago.  Whenever I attempted to stand, my legs would just collapse from under me…

A lot of people, would think it would be great to spend a whole day in bed, not doing anything – no chores, nothing instead spending the day watching TV, films or listening to music.  However, let me tell you the reality of it – it is so boring being stuck in a bed, I would much rather be doing something much more constructive than watching endless episodes of CSI, despite it being one of my favourite shows.

On topic, I was recently reading an excellent blog post regarding a person’s experience of a condition in which she describes as having ‘many voices’ and in which the community of people with the same condition is large – each sharing their own personal experiences of living with a chronic illness.

And that got me thinking of my condition – long-standing brain stem lesion and spastic paraparesis.  To search information about it, is extremely difficult – most being medical journals, to difficult to understand for those without a medical degree!  And the big fact that I have not met one single other person with either diagnosis.

Many of the information that can be found regarding my condition are those usually found on websites about Multiple Sclerosis, as MS can present with brain stem lesions, and spasticity of which I suffer is a common complaint within the MS Community.

However, I do not have MS, so therefore am unable to really approach MS organisations for support and information.  Near to me is an organisation for people with brain injuries called Headway, however many of the case studies that I have read suggests that the organisation provides support and help for those with acquired brain injuries – usually those sustained in adulthood as a result of an accident or trauma.

So where do I turn for help and support with my condition? I feel as if I am one person, on my own living with this condition with nowhere to turn, or for people to listen and understand just exactly what I am living with day-to-day…

Image: http://www.bbc.co.uk/wales/audiencecouncil/sites/your-voice/

 

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