As you may already be aware September 10 – September 16 is ‘Invisible Illness Awareness Week’ and as part of this fantastic campaign they are asking for people battling chronic invisible illness to share pictures that brings hope. This can be anything from a photograph depicting a favourite place, a pet, flowers…anything which provides hope! So, as I have been unwell lately and have not been able to participate in the Weekly Photo Challenge, I thought I would share some pictures that bring me hope!
My beautiful dog Honey who provides comfort, laughs, cuddles and kisses during times of illness and being bed-ridden!
This is a picture of Honey on ‘Rhiann Watch’ on a day in which I was in bed due to severe dizziness and incredible weakness in my legs. Was home alone so Honey saw it has her duty to keep me company and make sure all is well!
I love sunflowers, all flowers really! They are really pretty to look at – and sunflowers especially. At a recent ‘Life 4 Living’ group session we were asked to visualise sunflowers as part of a stress relieving exercise – which really does work!
And for all of you who know me – know that I really love butterflies!! I find them really inspiring for all that they represent and stand for. They are the epitome of change and growth
Welcome to the sixth day of the WEGO Health Advocating for Another Carnival Blog! And thank you for all your support and kind messages thus far. Today’s prompt reads as follows:
Let someone else’s wise words inspire you. Find a quote that moves you in some way then free write about i. Don’t stop writing for 15-20 minutes. Now post!
The quote I have chosen for this prompt is:
I found this quote whilst browsing on Pinterest on a day where I was feeling particularly bad, lying in bed, bored and feeling utterly miserable due to the severity of my symptoms – than I found this and it just spoke to me almost immediately.
Anyone reading this who is also battling a chronic illness everyday knows how it can often get you really down mentally, as well as suffering physically. It can be so easily to just give up, and just stay in bed, rolling up in a ball and giving up on life. But although this seems like the best option, it isn’t going to solve anything. Even though it can be very tough sometimes, we have little choice but to battle on and live the best life that we possibly can and to find our own happiness. After all, studies within the field of positive psychology have shown that those patients who are happy and are positive in their outlook report less severity of symptoms and are often more physically well than those who are negative in their outlook.
And the quote also fits in nicely with the idea of a ‘gratitude diary’ that was suggested by a social worker who runs a local group which I attend weekly. The idea of a gratitude diary is to write between 3 and 5 things (or more if you wish) that you were grateful for and what makes you appreciate life – it could be anything from speaking to a friend on the phone, or going out for coffee with a friend to simply grateful for still being alive! It really is up to you! The idea of the gratitude diary is to strengthen emotional resilience and reduce stress, as well as teaching the mind to find the positives in a situation instead of dwelling on the negatives.
I have written a gratitude diary for a few weeks now, and it really does work! And it makes me more happy picking the positives of my day, and those activities that I have enjoyed and instead of dwelling on how bad I have felt because of my symptoms.
As I often experience tremors in my hands, I was recommended a great website in which after you sign-up you receive an email every night at the same time asking what you were grateful for. And then you simply reply to the email and all of your responses are then saved onto the website, and whenever you feel sad or ‘down in the dumps’ you can log-in and read all of your entries. And best of all it’s completely free and all of the responses can only be viewed by the account holder. To find out more go to:
Welcome to the fourth day of the WEGO Health ‘Advocating For Another’ Blog Carnival. Today’s prompt is as follows:
Today’s post theme is all about the reveal. What’s something people would be surprised to know about your life as a health activist, your community, or condition. Uncover it and elaborate upon it in a stream-of-consciousness style.
In my day-to-day life I am not aware of other people’s perceptions or their personal thoughts regarding my life, health community or even my condition – it is often the elephant in the room – the topic that nobody wants to discuss as they may feel awkward or simply do not want to pry. People often stare at my crutch, but do not ask me any questions on the reasons why I might need ir, looking at me suspiciously as if I am only using it to exaggerate my condition for disability benefits.
However, reading articles in magazines and from some replies from others after they have asked me how I am with the typical “That sounds awful, it must be so terrible living like that”; it seems people assume that living with any chronic illness or disability must make life completely miserable and living with one mean we all must be absolutely depressed all of the time; unable to have fun and enjoy life. However, as we health activists and patients know that this isn’t the case at all; humans are resilient and can withstand a lot more than we think we can cope with!
The perception of chronic illness
And although many of us, have to cope with a chronic condition; with unpleasant symptoms everyday we are still able to enjoy life. I think living with a chronic condition actually makes people appreciate life more than those who are healthy, taking pleasure in simple things – for example I love having my nails painted, I find it relaxing and enjoyable, picking bright colours to cheer myself when symptoms have been bad. Also enjoy watching comedies; and always laugh with the jokes. Although I often feel unwell with the symptoms associated with my condition, I still make an effort and enjoy volunteering with a local charity and have even recently helped during an Open Day to advertise the Centre, pampering the ladies with hand massages and painting their nails – felt great putting smiles on other people’s faces!
One of my favourite comedies
It makes me sad when I read stories in the newspapers regarding ‘benefit cheats’; and how people assume that when people have been spotted out having a great time then they surely must be cheating the system. Just because someone is ill or suffers with a disability does that mean they should no longer enjoy life? Should they simply shut themselves away and wither away? We should be able to go out and have a great time during the times of respite from our symptoms without judgement and criticism.
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?
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!
