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Welcome everyone to Day 24 of the WEGO Health annual ‘National Health Blog Post Month’.  Today, instead of writing one of the prompts provided, I would instead write a follow-up piece to the Day 18 Post ‘How should I care for someone with your condition?  Well you should…

What if your friend suffers with a chronic illness?  What type of things could be done to help them?  For friends, it can be harder for them to fully understand the condition on which someone lives with, especially as the friend does not see them everyday, and therefore may not see the full extent of how the condition affects their friend.

Living with a chronic illness can be challenging and frustrating for everyone involved.  The symptoms often fluctuate, for me they can fluctuate frequently; symptoms which can change instantly.  Symptoms can also be unpredictable – never knowing which days are going to be bad and which days will be good; often patients do not know how they will feel one minute to the next.  This can make plans for going out incredibly difficult and challenging.

With a condition like mine, it can also be challenging to know how well I can function from one day to the next; or one minute to the next.  One minute my mobility can be relatively okay, using my crutch and then  the next I can be on the floor after my legs have given way.  This obviously can make incredibly challenging to go out, and often plans need to be made to cover all eventualities.

So, how can you help a friend who suffers with a chronic illness?

Well for starters, to be a friend of someone with a chronic illness, in my opinion you should be non-judgemental and understanding.  It can help if the person educates themselves on their friend’s condition.  To learn how the condition can fluctuate and change, and all of the symptoms which can come with the condition.  With my condition, it can affect mobility, vision, cognition, and also constant dizziness and episodes of vertigo.

It can also be helpful for the friend to learn the changing needs of the patient and never make assumptions of their capabilities of the person.  Often, the person may look really good, but the reality may be the complete the opposite.  So, always, ask the person what mobility aids that they think they may need for the trip out somewhere and also to ask them if there is anything that you can do to help them.

The biggest think that I feel that you can do to help your friend whom suffers with a chronic illness is to take them out on outings for a few hours.  The biggest challenge that I often face is socialising.  Due to my condition, I am unable to drive, and due to the severity of the symptoms and the problems with my mobility, I can not go out alone.  I am unable to cope with public transportation such as buses, as it requires a lot of standing around waiting for its arrival, which as my legs are weak, I just cannot do.  These limitations have severely affected my friendships.

I could invite friends to visit me at my home; but often feels that I am inconveniencing them due to the travelling that they would have to do to reach my house.   Also, when I am having company; I like to make sure the house is clean and tidy for them, so all the preparation that I would have to do, really would deplete the number of spoons for that day, and by the time that they arrive I may feel so tired that I am really not up to socialising or playing hostess to the guest.

When I am invited to spend time with friends ( although I really only have one friend who is able to physically take me out) it really cheers me up,; makes me so happy to see someone I haven’t been able to spend the time with, that I would like.  It is really useful for the patient when being invited out within the wider world for a few hours; for me, a lot of my time is spent inside the house, so anytime that I do get to go out for a few hours is special.

If the person has a chronic illness has, like myself have difficulties with their mobility, then for the friend it is important to consider transportation – if a group of friends, for example, is meeting for a meal, then it is important to include the person with the chronic illness, and to check whether they have means of getting to the venue, and if not then help them with the planning for transportation that will be suitable for the person.  If you are able to drive, then volunteer to pick them up and drop them at home afterwards.

When friends go to these efforts to be inclusive and help us with chronic illnesses, it can make us feel valued as a friend and just makes us feel special, and are always so appreciative of any help that friends offer.  Life with a chronic illness can often be very lonely and isolating, so knowing that friends are there for us, and are willing to go the extra mile to help us with things like going out, and helping with transportation can be so uplifting – and reminds us that we are not alone, and that although it may  not always feel like, we have friends out there who care 🙂

Although, friends should be made aware, that there is always that possibility that we may need to cancel plans at the very last-minute due to the unpredictable nature of chronic illnesses.  This can be very frustrating, and know how upsetting it can be when plans are cancelled.  It is also extremely disappointing for the patient too as when plans are made, we often really look forward to go out and have fun, and to then being unable to function and need to stay at home can be demoralising as we spend so much of our time at home anyway!  So, friend always be understanding when plans have to be cancelled and to never blame the person – it’s not their fault but their condition!  If blame is directed towards the chronically ill person that it can often make us feel even worse.

Another big tip that I can give is to keep in regular touch with the person.  Send a message, whether it be a text, message via social media.  Just to let them know that you are there for them and more importantly that you care.  Often, I find myself totally alone, and the loneliness feels even more evident, so it;s really lovely when I do receive messages.  It makes me feel connected to the world and to others even though at the time it may not feel like it.

So, those would be my tops tips for friends of the chronically ill?  Are there any tips that I have missed out?  Let me know….

Hello Everyone, a brand new day has arrived and is now time for the next post in the WEGO Health Activist Writer’s Month Challenge.  And the prompt given for today is as follows:

5 Dinner Guests…Who are 5 people you’d love to have dinner with (living or deceased) and why?

So, this challenge is quite tough, as there are many people, living and deceased, who would be fascinating people to invite for a dinner part.  After some thought, I have  decided that I would invite the following people for my ultimate fantasy dinner party:

Image: http://llmcalling.blogspot.co.uk/2012/03/dinner-party-for-peace.html

1 and 2. Marissa and Theresa: whom I have met through a support group for people living with dizziness.  I would love to invite all my friends who I have made from various groups and communities I have met during my journey of living with chronic illness.  However, as I only have 5 places I have chosen Theresa and Marissa as I feel these two amazing women have my biggest supporters, picking me up during the bad times, even contacting me via Skype when I have been feeling very down…

3. Jodi Picoult: I have chosen Jodi Picoult as I am a massive fan of her works, and believe she is a fantastic author, owning all of her 19 published books.  As a writer myself, I truly admire her writing style and the extensive research she undertakes for the subject matter which she is writing about.  Not only are her books absorbing, but also raises questions various ethical and moral dilemmas, making you ask question your own beliefs.  If you have not read any of her books, I would highly recommend reading them…

4. Adele: I have chosen Adele, as I believe she has an amazing talent, and often find myself listening to the lyrics of her songs, finding words and phrases that I can relate to.  Recently, watched a concert that was recorded when she performed at the Royal Albert Hall in London.  Not only did she sound amazing, but was also incredibly funny and down-to-earth.  I am sure she would have many interesting anecdotes to share, as well as the opportunity for high-quality entertainment during the evening….

5. Michael J. Fox: I am not a huge fan of Michael J. Fox but truly believe he is an inspiration to many, especially those suffering from chronic and life-long conditions.  It is inspiring the way he battles Parkinson Disease with grace and dignity, raising the profile and awareness of the condition and help a great many people also battling the degenerative neurological disorder. I recently discovered a quote that he wrote, which said “I can get scared, get frustrated, but I never get depressed…because there’s joy in my life”.  I believe there are a great many lessons that could be learnt from a man like him, as well as being able to gain insights on how to cope when facing a life-long neurological condition…

So, there are my 5 dinner guests.  Who would be your top 5 dinner guests?  Share yours below, or post the link to your blog so I can read them.

Hello, again!!  Another day, and another post for the WEGO Health Activist Writer’s Month Challenge.  Ready?  Today’s prompt reads as follows:

10 things I couldn’t live without…Write a list of the 10 things you need (or love) most…

Another challenge that sounds so easy, but when sitting down and trying to complete it is actually quite difficult.  I presume that things such as food, water, air don’t have to be included as these are things that everyone needs to survive and live.  This challenge seems much more personal…things which I probably could live without, but things which make my life better…

So here’s my Top 10 Things I Love Most or Couldn’t Live Without (and in no particular order!):

My Parents – an obvious first choice, as they are the most amazing parents – supportive and caring.  They are both my rocks and have been with me through the good and bad times, and Dad without moaning, drives to appointments or wherever I need to go, or if I need to go to the shops for something, and when he’s not working will go out and buy me lunch which is a great help especially when my legs are feeling particularly weak so don’t have to worry about standing to make myself something to eat.  And Mum is super brilliant – helping me out whenever, phoning to check on me if they are both working and I’m alone in the house.  Mum is also the greatest person to talk to whenever I am feeling down or having a bad day, and we also have a great time together on the rare days we go out shopping together, or even staying in the house and watching a film.  No words can express my gratitude to them or how much I love them…
My Dog – my dog Honey, although crazy and unbelievably annoying at times (you should see her whenever people come over, particularly when they leave!!).  However, she is also the most sweetest, caring and loyal dog – if I’m on my own and have a fall she is there by my side straight away making sure that I’m OK.  Or, if I’m having a particularly bad day, and balance is bad and my legs are very weak she is constantly following me, and never wants to leave me out of her sights.  And if I’m bad, and lying in bed or if I’m on my computer, she will lie down beside my bed, or on the bed, or lie beside my computer chair.  Once I fell whilst on my own, and was unable to get up afterwards, and she lay down beside me the whole time, until Mum came home approximately 20 minutes later, soon as she came through the door Honey rushed to her to alert her that I needed help.  She is a super dog!!

Other family members – As with my parents, also couldn’t live without other members of my family, all of whom are also supportive and help whenever they can.  I have stayed with an Aunt and Uncle of mine when my parents have gone away on holiday, as couldn’t cope on my own for the duration that they would be away, and so they kindly took me in and looked after me in their absence…

My Crutch – My crutch is my main mobility aid which I am finding that I am becoming more reliant upon.  Whenever I am out of the house, I constantly make sure that I have my crutch with me as due to the dizziness and problems with my balance, I find that it is something that helps ground me.  And also due to the weakness in my legs, the crutch is incredibly useful to help keep me somewhat upright whenever my legs buckle or give way.  And it means that I can have somewhat more independence in the sense that I do not constantly have to hold onto somebody when out…

Online Friends and Community – The girls who I have met online are also something I can not live without now that I have met them.  It’s lovely to have finally found a group of amazing and special people, who I count upon during the good and bad times…who can understand what I am going through.  And it’s lovely that I am able to talk to them online via Skype and we can share our problems, or triumphs and have someone on the end of the computer to talk too when going through a horrible time of it, and know there is someone there who understands.  Love you guys and a special shout out to Marissa, Theresa, Lynda and Michele…

My Computer – Another love of mine and something that I couldn’t live without.  It enables me to buy things that I need such as new clothes, books or DVD’s, as I am not always able to get to the shops to buy these, especially long shopping trips due to the weakness in my legs and the inability to stand for very long.  As I found recently, when I have had the rare chance to get out, not all clothes shops even have benches or seats in their changing rooms, which I need to use, and as a result had a few falls whilst trying some clothes on – online shopping makes it so much easier in that I can order clothes and have them sent to me and can try them on at home.  Also enables me to Skype with friends who I have made online and who are very special to me, and other chores such as paying rent or researching and of course writing the blog!!…

My extensive DVD Boxset Collection – Yes, I have quite the Boxset Collection in my possession – CSI, Bones, Criminal Minds, Grey’s Anatomy, Private Practice and the rest.  But these are great at keeping me occupied during the times I am alone, stuck inside the house, or to give me escapism from my illness.  They also come in handy, on the ‘very bad days’ when my legs are so weak, and I am feeling very bad that I cannot get out of bed, and so they are excellent at keeping me occupied and entertained during those time…

Music – Yes, music is another passion of mine.  I love all different types – pop, rock, jazz, blues.  I listen to it when doing chores, or am stuck in bed, when I’m on the computer, to remember memories from the past or to create new ones. Music to make me happy or to wallow in when feeling sad.

Twitter and Facebook – I probably could live without these, but these are excellent resources for finding friends new and old, for keeping in touch with friends or family living near or far, or for generally keeping in touch with the latest news or gossip.  I use it a lot for the support group aspect – for making new friends who may be experiencing similar problems as me.  They are also fantastic for reaching out to different companies or for finding organisations which may be able to provide support or help. Also, a great tool for spreading the words of my blog and to let people know when there is a new post up…

Books – I could not live without my books…especially my Jodi Picoult novels as I adore all of her work and is a writer I really admire.  Love books which can provide escapism, to take you off and wonder different countries or worlds. Books which explore the past, present and future.  And especially, as with Jodi Picoult books, ones which make you think and question different moral and ethical questions.  If there are any avid readers out there, I would thoroughly recommend Jodi Picoult’s works!!  And there are an extensive number of books, to help you learn help you with particular problems or concerns.  Having a chronic and invisible illness can be so tough, knowing that there isn’t a cure out there or no treatments that can really help, so I have found a book called ‘Sick and Tired of Feeling Sick and Tired’…a books which provides hope and coping strategies for those like me suffering from an invisible chronic illness, and how to deal with the emotions and difficulties that come with living with them.  A book that has also been recommended to me is ‘How to Be Sick by Toni Bernhard.  All books mentioned can be found at Amazon.com (US), Amazon.ca (Canada) or Amazon.co.uk (UK).

So those are my Top 10 of things that I couldn’t live without, what are yours?

All comments welcome….

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