For me, purple is my favourite colour – a lot of my clothes are purple – a lovely bright colour which makes me feel good and instantly cheers me up. I also love my Kipling bags and have a couple in deep purple. And so for the Weekly Photo Challenge I have used a photograph of my case for iPhone which is purple.
Due to my medical condition I have a lot of falls, and one item that I have always have on me in case of an accident is my phone, which will enable me to contact someone immediately for help. As I have an iPhone, as others users will know the case is made of glass, and so can easily be broken – and am sure will be costly to have it fixed!! So, I was very interested when watching ‘This Morning’ they featured the LifeProof iPhone Case.
The LifeProof case boasts that it can protect your iPhone against every-day hazards, even the ability to take it swimming or underwater with you if you so choose! And it is the fact that it can withstand drops, knocks and tumbles that appealed to me. It now gives me the freedom to take my iPhone with me everywhere without the fear of it breaking during a fall!!
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.
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!
The WordPress ‘Weekly Photo Challenge’ asked, what does inside mean to us? Well to start, the word ‘inside’ is defend as something which is ‘the interior, inner or enclosed part or surface.’ Now, as my blog is concerned with my life living with a neurological condition, I thus decided to take a photo of a diagram of the brain, and specifically the brainstem.
This organ weighing approximately 3 pounds lies inside our skull, in charge of all the most important functions such as breathing. It also holds the key to our being – memories are stored here, personality develops within certain areas of the brain, it can control whether we feel pain or other emotions. And when things go wrong within the brain or some part is damaged can result in deficits according to where the damage lies – it can also result in experiencing weird symptoms such as my dislike for high ceiling!!
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’!!
Welcome to another blog post from ‘My Brain Lesion and Me’!
This month, the folks at WEGO Health are concentrating on ‘Health Activism in Real Life’. So, instead of the focus on being on online support groups or on those like me who blog regarding a particular health condition or cause the focus is instead on those organisations or even on specific people who use the more face-to-face approach to health activism. This could include any of the following:
Non-Profit Organisations, i.e. charitable organisations
Support Groups
Meet-Ups with fellow patients
Awareness Events
Conferences focusing on health conditions or causes
So, I thought that I would share my thoughts and views on this topic and its role in providing support to those who are dealing with chronic illness or disabilities. Now, I have found great comfort in online support regarding my own health condition and subsequent disability – the internet has made it possible for me to forge friendships and a strong support system with people who may not have the exact same condition as me, but who are nevertheless exhibiting similar symptoms that I face every day. Without the internet, it would not have been possible to speak out about my condition, increasing the awareness of my condition and what it is like to live with through the 12-12-12 Project over at Abledis.com.
Without the technological advances that are available at our fingertips – the computer, smartphone, tablets and so forth I am afraid that I would probably live a very lonely existence indeed, stuck in the house constantly with only my parents and the dog for company. So, the internet and the support networks available are such a godsend for thousands of people out there who are housebound or who are unable to get out as often due to their health condition, giving the ability to be able to connect with others and not feel so lonely.
However, this isn’t to say that there is no place for the offline, there are many non-profit organisations out there that are doing a fantastic job in providing and support for patients or service users, advocating them in times of problems and providing an ear for them when they are struggling. I myself volunteer for a great non-profit organisation providing support for those living with mental health difficulties, called Mind and the support they provide for people and the others services that they provide. Not only that but it provides a safe, comfortable environment for people to make new friends and talk about their problems and experiences without judgement or criticism.
There are times when I just wish that there was a support group out there for people like me, experiencing a similar condition to myself where I can get support, advice and make connections with others – but there just doesn’t seem that there are any organisations or non-profit charities that my particular health condition and situation really ‘fit’ into. Even searching on the internet hasn’t helped!! But have started going to a new group, although wouldn’t class it as a support group more of a group for ‘meeting-up’, learning about different topics and hopefully going on trips around the local area. It as been great for me – enables me to get out of the house for a few hours (something I can’t do with online groups!) and chat and meet a wide range of different people, most of whom living with a chronic illness or disability.
So, I am starting to get the best of both worlds – using the online and offline resources for health activism and both definitely have their advantages and disadvantages but still both are equally valuable in providing patients, carers and other people involved within the health community to share personal stories, gain knowledge, connect with others…
So, which of these do you prefer – using the online for health resources and enjoying the privacy and anonymity it provides or do you prefer the more personal touch and connect with others face-to-face, enjoy getting to know others on more of a personal level? Would love to hear your views on this topic!!….
