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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 is as follows:

If you could go back in time and talk to yourself (or your loved one) on the day of diagnosis, what would you say?

Getting a diagnosis for me, was bittersweet, on the one hand, I felt relieved – relieved that all the tests and hospital appointments; relief that in fact all the problems were not just “all in my head” as I was told so many times before by a number of doctors. It felt as if a huge weight had suddenly been lifted from my shoulders; all the symptoms that I had been experiencing had finally been validated by the medical community – finally I had proof. Many people hate labels, however labels can be useful – labels can bring people together and give a sense of belonging as well as the knowledge that there is a label and name for what you are experiencing.

On the other hand, however, here I was being told the diagnosis – a long-standing brain stem lesion. A condition, which as the name suggests is life-long; not curable and furthermore was told that there was nothing that could be done in terms of treatment. This, as you can imagine, is disheartening and frightening. The first thought that goes through your head is “Well, that’s my life over!” At that time, the symptoms were bad that they were leaving me unable to work, and if the condition was one in which was life-long then does that mean I’ll never be able to work? The situation I was finding myself in felt hopeless; as if I no longer had anything to look forward to.

So, if I was able to go back in time and talk to myself on the day of diagnosis, I would tell myself as bleak as things look at that moment – it does get better. I will tell myself all the wonderful achievements that I manage to achieve – completing course, starting a blog, asking to write articles for various websites, and even going to help set a group for those with illness and disabilities and becoming secretary of that group.

As I remember, at the time of the diagnosis, because of the severity of the symptoms I was unable to go out. Even now, I am unable to go out unless I was accompanied by another person, however back then the amount I spent outside of the house was very minimal as my parents worked and there was no one around to take me out. Therefore, after being diagnosed I was afraid that my life would involve staring at the same four walls everyday, stuck inside with just the dog for company. If I was able to return to the day of my diagnosis, I would be able to tell that girl sitting there that her life didn’t have to be that way – she could get help from Social Services and with the help of direct payments be able to employ a personal assistant to help her get out into the wider community and be able to do all the things that she wanted to do – be able to choose her own beauty products, shop for herself instead of relying on her parents or internet shopping, as well as going to the cinema or swimming. All of the above which I am now doing and enjoying every minute! Now I feel I do have a purpose and with a little planning am able to do all those things that I had wanted to do but felt was unable.

At the time of the diagnosis I also felt lonely – as if I was the only person going through all of what it was I was experiencing. If I could go back and speak to myself on the day of diagnosis I would surely tell myself that I will eventually find friends; friends both online and offline who although do not have the same diagnosis but nevertheless understands what it is like to live a life with illness. Would also tell my younger self that those feelings of isolation and loneliness would not last forever.

I would tell the sad, lonely girl to stay strong and positive and ensure her that positive things will eventually come into her life.

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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 is as follows:

Write about your favourite social network.  Do you love Twitter? Facebook? Pinterest?  Why? 

I can be found on most social networks – Facebook, Twitter, Google+, Pinterest and Instagram!  Facebook used to be my first choice of social networks as, it was the one all my friends used; it was convenient and had a lot of features that I could integrate with online socialising such as the messenger IM, games and so on.  However, since starting the blog and the health activism, Twitter has now become my favourite social network to use.

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Twitter has become my favourite social network for several reasons:

  1. It only allows 140 characters per tweet and therefore is quick to get your message out there.  It gets straight to the point, and can easily receive and view content quickly 
  2. You can be updated with current and breaking news which can come in very handy.  You can follow organisations, charities, or even experts on your specific interest, and able to get up to date on all the latest research, studies and advice relating to your health condition for example
  3. I love the ‘favourites’ feature – with so many blogs and articles that people tweet which I want to read but often don’t have the time, I can ‘favourite’ them; and save those links which I can read later when I have the time
  4. Twitter allows you to send your message; your story where potentially millions of people will hear it
  5. Twitter is also great for promoting your blog and new posts which have just been published and to get more traffic to the blog.  According to my site statistics the majority of people find my blog through Twitter
  6. It is a great platform for networking with other ‘spoonies’ and make new and lasting friendships – I have been blessed to have met so many wonderful people, who I now regard as great friends.  Twitter allows us all to stay connected and to stay up-to-date with what is going on with each other.  For example, if we read that someone is having a bad day then we can send messages of support and comfort.  Twitter can basically used to form a small community of like-minded people, or people with shared experiences or in out cases illnesses!
  7. Twitter is also a great platform to express opinions on a wide variety of local and global issues; and for bloggers and health activists especially it allows us to express opinions on the issues that matter most to us, and what is relevant to our health conditions
  8. Twitter can also be a great tool for researching and finding new information by searching using specific hashtags.  This may be useful for patients wanting to find information on new treatments or therapies that have been recommended by their medical team and determine how effective or what other patients thought of the treatment/therapy
  9. The service TweetChat allows users to get involved and communicate live with organisations and chat with like-minded people.  I love getting involved with the WEGO Health Chats via Twitter every week and discussing various topics relating to the chronic illness community
  10. There are plenty of Twitter users that provides us all with a constant flow of positive quotes and messages in order to remind us to direct our thoughts in a positive way and become better than we are.  You can log in to Twitter on a bad day and within minutes be lifted by positive words
  11. Twitter can be used on computers, phones and tablets via the website or an application that can be downloaded – so you are able to get your message out anytime, anywhere!

Furthermore, if it was not for Twitter, I would never have met some wonderful people and help form the ‘Spoonie Book Club’ – a book club for those of us battling with chronic illness.  A fantastic opportunity to talk with friends on topics that matter most to us, but more than that, also allows us to forget about our illnesses and conditions for an hour and just have fun discussing a great book and have some fun.  Thanks to the other ladies that helped form the book group – Aisha, Anya and Megan!

If you would like to join and discuss some great books, you can connect with us by using the hashtag #spooniebookclub – the details of the book for this month can be found here

What is your favourite social network?  And why?  As ever would love to hear your thoughts!

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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.

The first prompt reads as follows:

It’s often hard to like pictures of ourselves – post your favourite picture of yourself 

 

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My favourite picture of me – to be fair the only decent picture of me there is!

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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:

Patients, what advice or tips do you have caregivers out there – professional or otherwise!

To be a patient can be exceptionally difficult – it can be lonely, isolating and as a result we often rely a lot on our caregivers, specifically close family members.  We rely on them for emotional support, often financial support, and also caregivers also asked to carry out all those tasks when we are incapacitated and unable to do so.  It is very hard to give tips for caregivers, as the needs of individuals with chronic illnesses varies greatly depending on their condition and the severity that the symptoms affect them.  However these are a few tips that I could give:

  1. Try to understand the patient and their situation, whatever that may be.  It is true that it is very difficult to understand the predicament someone is going through, unless you have been through that situation yourself, and this especially applies to the experience of chronic illness.  However, if you are caring for someone with a chronic illness, and particularly those like mine which can cause unusual symptoms, listen to what it is like for them and try to understand how frightening it must be for them to go through.  Learn about any possible triggers that can cause symptoms. 
  2. Of course, caregivers are not only family members and close friends, but many are employed to care for those who are chronically ill.  For example, I have a Personal Assistant (P.A.) .  In this case it may be particularly useful for you to ask the person you are caring fir, questions about their condition and educate yourself as much as possible about all aspects of that particular condition as it will make it much easier for you to care for them as well as knowing how best to help them overcome some of the difficulties experienced as a result of the illness.  Find out the needs – for example, I often when using my crutch like to hold onto the arm of the person with me, to help keep my balance and to prevent falls.  It is imperative for caregivers to find out the needs of the patient before all else, to let the patient have semblance of control over their lives.
  3. Be understanding and patient.   it can be very difficult to plan ahead of time; to plan days out and other activities as the patient will not know how they will feel as that particular moment of time.  Trips might have to be postponed or cancelled at short notice.  This can be very frustrating for not only the patient but also the caregiver.  In these instances it can also be important for carers’ to be PRACTICAL and INVENTIVE, perhaps thinking of other activities that the patient can take part inside the house – this could be time spent playing board games, or a cinema afternoon playing favourite movies with popcorn and wrapping up with a quilt or blanket.  Or perhaps one of my favourite hobbies – making cards!
  4. Be NON-JUDGEMENTAL as many conditions produce symptoms that can be embarrassing or hard to understand, so it is very important for carers to not judge the person because of them and instead be supportive and kind.
  5. To LISTEN, be SUPPORTIVE and SYMPATHETIC.  This is incredibly important after the initial diagnosis; the patient will be scared and incredibly anxious about what the future will hold – not knowing if the condition will become worse and so on.  In this case show that you still love the person despite everything.  Also, never assume you know what the person is feeling or experiencing on a daily basis.  If  they say they are feeling very dizzy, and finding it incredibly difficult and so cannot go out – then BELIEVE them!  Give the person a cuddle – or go out and buy them a treat to put a smile on their face.  They’ll be very appreciative of it – I know I did when a very dear friend gave me a beautiful bunch of flowers; or when another friend sent me a beautiful butterfly brooch as she knew how much I loved them and wanted to do something nice for me when I was going through a difficult time.
  6. To HELP out with certain tasks that may be difficult for the person you are caring about and to not make a big deal about doing so, as this can be detrimental to the self-esteem of the patient.
  7.  To keep a list of contacts somewhere accessible in case of emergencies – including doctors telephone number, emergency contacts and other information that will be useful.  This is useful when dealing with conditions like mine, where falls and accidents can very easily occur.  I have certain telephone numbers that I can ring if I hurt myself or an emergency crops up when I am on my own.  If the patient has deteriorated and mobility has become severely affected; falls and accidents are becoming more prone than I would definitely advise getting a social services assessment done as they can provide excellent resources and can offer assessments for adaptations for the home if needed, as well as offering services such as ‘LifeLine’ where emergency contacts can be alerted in the event of a fall or some other accident.  They can provide peace of mind for carers when they need to go out but are worried for the patient’s well-being.
  8. And lastly, it;s important for carers’ not to burn out themselves so I would advise for them to take time out for themselves – perhaps, join a support group for other caregivers’ or take up a new hobby or past-time.  Generally keep fit and healthy so that you are able to provide the care that the patient needs.

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But perhaps most of all, it would be useful to give tips to doctors advice on how to care for those with chronic illness.  So, many times I have read stories on blogs or forums regarding the poor treatment of them, lack of sympathy and understanding.  It’s ridiculous, as to my knowledge medicine is supposed to be a ‘caring profession’.  So, perhaps it is time that the chronically ill rise and tell doctors how we would like to be treated.  If I could advise doctors on how to treat us, these would be my top few:

  1. Take an active interest in patients – learn their names, find more about our lives, likes and dislikes and more importantly everything there is to know about our health, and I mean everything, especially if the person is yet to be undiagnosed as you never know which information may be important to find that all important diagnosis.  Be warm and friendly, and treat the patient as a person rather than a set of symptoms, this is important to build rapport with the doctor, as if no rapport is established; then it makes it so much more difficult to be able to open up to the doctor and tell everything that is going on with our health
  2. To LISTEN and more importantly BELIEVE your patients.  I am sure we have all encountered doctors who didn’t listen to anything that we have told them during consultations and instead, the doctor merely made assumptions regarding the health of their patient.  So, doctors please listen to your patients and believe in them – fight for them; fight to get answers for them and don’t give up on them!
  3. Be upfront and tell the patient all of the information regarding tests results and so on – This is for me is one of the most important tips that I could offer a new doctor or nurse.  There really is no point, in my opinion, to sugarcoat information – the patient has to know everything there is to know so that they can make an informed decision.  I remember that I only found out about part of my condition, the spastic paraparesis after reading about it on a letter that the consultant had sent my G.P.  This consultant had never mentioned about this during the appointment I had with him, and if I had not read the letter, then I would not know anything about it.  And if I hadn’t know about it, and after searching about the condition online then I would have been very worried and distressed when the condition in my legs started to deteriorate as I would not have had a clue what was going on due to the lack of information!!  So please, newly qualified doctors, make sure to tell your patient all there is to know regarding the results of tests run, or even regarding the condition that has been diagnosed so the patient knows exactly what to expect.

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What advice would you give your doctor or caregiver?  Please get in touch – as always would love to hear your thoughts!

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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:

Say WHAT?  What’s the most ridiculous thing you’ve heard about health or your condition?  Where did you hear it and what did you think? 

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I once heard, a few years ago, by a doctor, that the dizziness I was experiencing was simply in my imagination and couldn’t possibly be experiencing it as I was far too young!  Yes, dizziness is often discussed in relation as a symptoms often experienced later in life and sometimes referred to as “just another part of getting older.”

However, although dizziness is often seen in older adults, many of us, from experience, know that it can occur at any age, and can be as a result of a number of different factors.  Dizziness can be as a result of a head injury, degenerative diseases and other physical ailments.  And as I have read countless of times, during research, symptoms of dizziness are not normal at any age and are a sign that something is wrong, and therefore should be investigated.

Obviously been told this, and especially, someone in a position of power, like a doctor, and given that I was very young was distressing.  Distressing to think that although the dizziness was severe and affecting me so badly, that no-one believed me.  Telling me instead that it was all in my head also meant that the dizziness I was experiencing was not being investigated by doctors, and therefore further delayed me getting the correct diagnosis.

Obviously any symptoms that someone is experiencing which is out of the ordinary should be thoroughly investigated until all avenues have been exhausted, for peace of mind if anything.

What if the doctors that I visited took my dizziness more seriously?  Perhaps then I would have gotten a diagnosis more quickly.  Would it have made a difference in terms of treatment?  Would the dizziness be less severe if I had interventions sooner?  That I cannot answer but it would have meant that I wouldn’t have gone through so many years of believing that the dizziness was all in my head.

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