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NHBPM Day Twenty-Eight: The Ever Changing Goal Posts…

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Welcome to the penultimate post of this November’s month-long challenge, thanks to WEGO Health’s ‘National Health Blog Post Month’.  Today, I have used a prompt from a few days ago instead of one of the prompt’s set out for today’s date.  The prompt asks us how have our goals as a patient/advocate evolved?

In my opinion this is a great question, and I believe that often these goals change when a definitive diagnosis is finally given – especially when we are talking about a diagnosis of a chronic illness.  Before, a diagnosis is given of a particular chronic illness there is often hope – hope of a diagnosis, hope of a miracle treatment and eventual cure, and then going back to enjoying life and achieving all those goals set out before illness reared its ugly head.  Dreams of travelling, going to University for a career of your choice, eventually leaving home and getting a place of your own, and so on.

However, then the diagnosis is finally given – and then you find yourself with this chronic illness – one in which there is no treatment, or even cure.  An illness, which is embedded so deep within the body, that it is never going away.  Then the goals will inevitably change – some may have to be scrapped entirely, others the goals posts may have to shift slightly to be able to achieve the dream.

This is what happened in my life.  I once had lots of goals – some I thankfully, have managed to achieve such as finishing University.  Others, however I have not such as gaining a job and starting on the career ladder.  After University, when all of those pressures that were on me all stopped, the deterioration in my health started to show itself – the dizziness became more severe, lasted longer and so on.  By then, I was hoping to be able to start with some driving lessons, so I would be able to get myself a car, and then find that dream job that I had been wanting.  With the severity of the dizziness, however, this was just  not possible.

And so the goals shifted.  From wanting to achieve a start to a career and using the degree which I worked hard for, this changed to getting through each and every doctor and hospital appointment; with every test and procedure I wanted to get myself closer to that diagnosis, treatment and cure.

Then came the eventual diagnosis eventually came in July 2010 – a long-standing brain stem lesion and spastic paraparesis.  Finding out that there was little they could for me other than trying various medications to keep the symptoms under control.  No real treatment, and definitely no cure.  Inevitably, my goals had to shift dramatically, especially when the symptoms deteriorated further, and when my legs began to give way after standing for shorter periods of time. They went from being to find an eventual treatment and cure to just getting through each and every day; to search for the most suited medications for myself so I can live as near as normal life as possible.

And so there are my goals for today – just to get through each day as best as I can; to live a happy and as normal life as best I can; to make the group that I am secretary of the best it can be.  Sure, I have other goals such as wanting to visit Italy, to meet my favourite author, but these goals might have to be on the back burner at least for now….

As always, would love to hear your thoughts and views, or messages of any kind!  Are you a patient?  Have your goals changed, and if so, how?

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NHBPM Day Twenty-Seven: ‘Bet You Didn’t Know That!…’

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Well, today is 27 of the ‘National Health Blog Post Month’ – so we’re almost at the end of this month-long writing challenge.  Today’s prompt are really nondescript’ so we really can choose how we interpret it!  The prompt I have chosen simply says ‘Be you didn’t know that…’

In this instance, I have chosen to share some facts that I have learnt about the brain!

 

 

  1. The brain is more active at night when you are resting
  2. There are over 100,000 miles of blood vessels running through the brain
  3. The brain’s activity during the waking hours is enough to light a lightbulb.  The brain is said to produce up to 23 watts of power
  4. The brain has no pain receptors; so the brain can feel no pain
  5. The human brain is the fattest organ that makes up the human body and is said to consist of approximately 60 per cent fat
  6. The first sense that develops while in utero.  The lips and cheek can experience touch as early as 8 weeks and the rest of the body around 12 weeks
  7. The brain uses approximately 20% of the total oxygen in your body
  8. It is said that yawning sends more of the oxygen to the brain, therefore working to cool it down or waking it up
  9. Interestingly, I often suffer with tinnitus which for years medical professionals was as a result of a dysfunction within the mechanics of the ear; however, newer evidence suggests that it is actually a function of the brain
  10. A living brain is so soft that it can be cut with a table knife!
  11. The brain is approximately 70% water
  12. You can continue to grow more neurons throughout your life by exercising the brain with puzzles, by reading and playing memory games
  13. Approximately 30% of the brain’s function is given up to vision, such as spatial awareness, depth perception and recognition
  14. We are unable to tickle ourselves because as a part of the brain called the cerebellum knows that we are doing the tickling and therefore sends a message to the rest of the brain to ignore the sensation
  15. The human brain is approximately 2% of our body weight, around 3 pounds, however it still uses 20 to 30 per cent of the calories we consume

There are some fun facts about the brain!  Did you already know some of these facts?

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NHBPM Day Twenty-Six: How I Take Time for Myself

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This is another post for the ‘National Health Blog Post Month’!  Today’s prompt, well, one of the bonus prompts asks us to write about how we take time for ourselves.  Well, since starting trips out with the P.A, I am finding that now I am having less time to really take time for myself to rest and recuperate!

I am a daughter.  I am a volunteer.  I am a friend.  I am a writer and social networker.  All these identities which are a part of me, takes time away from taking care solely for me.  I have obligatory chores to carry out around the house, to take some pressure off my parents.  Once a week, I volunteer for a few hours at a local Mental Health Resource Centre; plus all of my responsibilities as secretary of ‘Life 4 Living’.  And there’s my regular writing for the blog, and keeping my social networks up to date also.  And of course, my now weekly outings with the P.A too!

All these take time away from looking after me sometimes, and often after a busy week, I am burnt out – fatigue setting in, and with all the symptoms becoming flared, it means that I may have to spend much of it in bed as it leaves me unable to function.  Well, clearly this is body’s way of telling me to SLOW DOWN.  This is because, no matter the chronic condition that an individual may be facing there are two factors that are often responsible for those dreaded flare-ups: stress and overexertion.  So we need to listen to our bodies when it is telling us that enough is enough; STOP AND REST!

So, from now on I am going to spend some time possibly everyday to spend relaxing and taking some time for me to recuperate; to take some time out from the rat’s race, which is life.  So, how will I do this?  What are my favourite ways to unwind now?

Well, at the moment, when my days are often filled with activities and chores, at night however, I am often extremely tired, and consequently I am left unable to do much anyway.  As a result my nights are often spent vegging out on the sofa watching television.  Something light and does not require a lot of thought to help me relax and unwind from the day’s events.  A lot of the time, this is spent with my parents, or when it’s time for the soaps just Mum!  However, sometimes to take time for just myself, I may prefer to spend the time alone, so I will spend some time by myself in my bedroom, and watch a favourite film of mine (if it’s a bad day and need cheering up then it’s definitely time for ‘The Proposal – one of my favourite films!), or even one of my television boxsets (anyone for some Grey’s Anatomy?).

Another favourite pastime of mine, is reading.  A love more than opening a book, and delving into the story; loosing myself along the way.  Often, to relax and unwind before turning in for the night, I will spend some time reading a book.  Now I have a personal assistant, I have been able to spend some time at the local library; and have enjoyed myself taking time to look at the books on offer, and have just found a love for the writer Tess Gerritsen – even reading two of her books in under a week!  Although, of late, double and blurred vision have plagued me, even lasting for a few days.  My personal assistant has suggested trying some audio books instead, so next time I may do just that instead so at least I do not have to give up my love of books entirely, when my vision is becoming an obstacle for unwinding.

Another activity that I sometimes partake in to unwind and take time for myself is inevitably time spent on the computer – this could be anything from a bit of online shopping (just browsing usually though!), to playing games or spending time on social networks, chatting to friends.

I know a lot of people take a lovely, luxurious long bath to relax and unwind after a long day – unfortunately we no longer have a bath, but instead have a walk-in shower.  I love to spend some time in the morning; setting myself for the day ahead with a relaxing warm shower, with some glorious shower products to take time for myself.

There are always classes that you could take part in.  A class in something which you have an interest in, say astronomy or flower-arranging.  For me, I would love to take a course in web design but the inevitable lack of transport would be a barrier for me.  But for some of you, this could well be an option – and by signing up for a class, you are making a commitment and as they are scheduled, it forces you to take time out for yourself every week.

This weekend actually, I am planning some time for me by going out with a dear friend for a meal out somewhere.  So there’s another option for taking tine for oneself – by going out with a friend, or loved one and doing something which you both enjoy, and something which will take you from being stuck in the house, as well as taking you from your illness for a couple of hours.  This could be anything you want – bowling, watching a film at the cinema, a trip to a museum or art gallery, a trip to the theatre or just a meal out somewhere – as long as it takes you away from the journey of despair that is your chronic illness.  Go and have some fun!

What are your favourite ways of taking time for yourself?  Any other ways someone could spend time relaxing and unwinding from the stresses of life?

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NHBPM Day Twenty-Five: If I had unlimited spoons….

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Welcome to the 25th Day of ‘National Health Blog Post Month’.  Today, I am going to use a prompt from yesterday.  One of the prompts asks us to write about how we would spend our time if we had more than 24 hours or unlimited spoons.

So, I am going to write about how I would spend my day if I had unlimited spoons – and so had a full day with little to no symptoms and unlimited energy for the entire day ; to be able to do what I liked without worrying about the consequences or whether I would be able to do anything the next day.  How I would love unlimited spoons!

So, if I were to have unlimited spoons, then I would travel to Bath and spend the entire day roaming the streets of the city and all of its wonderful architecture and amazing attractions that it offers.

In the morning, I would have a substantial breakfast to give me plenty of energy for the day ahead.  After breakfast, I would have a shower and get dressed, and prepare a bag for the trip with everything I would need for a day sight-seeing.  My purse, phone, a digital camera to capture the memories of the day.  A map of Bath would also be useful, so I need not get lost in the unfamiliar surroundings of Bath.

 

The City of Bath

Then, I would head to Cardiff to catch a train that will take me to Bath.  It take just over an hour to get from Cardiff to the train station that is central to Bath, with quick access to the City Centre.  I have really wanted to visit Bath for some time now, a lot of people have told me what a lovely city it is to visit.  My first stop would definitely be the ‘Jane Austen Museum’.

I am a big fan of Jane Austen’s works, have read them all, and seen many of the endless adaptations of her works on both TV and film.  My favourite book of hers, is probably ‘Sense and Sensibility’.   I am also interested somewhat, in fashion, and Bath has its own Fashion Museum, so that would be a must-see attraction for me!  Someone I know recently visited Bath, and recommended a little Tea Room, called ‘Sally Lunn’s Historic Eating House and Museum‘ and serves the most famous delicacy that Bath has to offer – the famous Sally Lunn Bun, and the museum shows the original kitchen in which Sally Lunn baked her infamous buns!

A trip to Bath isn’t complete without a visit to the Roman Baths, which is the heart of the World Heritage Site; an honour that the city of Bath was given in 1987.

After visiting some of the main attractions that Bath has to offer, I thunk I would spend the rest of the day exploring the shops that bath has to offer., and then finding somewhere for some dinner at a lovely local restaurant.  And after, I would head home to Wales, for a well-deserved rest!!

If you had an endless supply of spoons for the day; how would you spend it?

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NHBPM Day Twenty-Four: Being there for someone with a Chronic Illness…

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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….

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