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Chronic Illness

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In Chronic Illness

Unsure of the Path I’m On…

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Hey Friends

Me again, for another post to my blog.  Hope all of you are OK.  I have to admit, lately I am struggling – feeling down, alone, sometimes I feel as if I have no friends or no-one that I can turn to – although absolutely no idea as to why I have been feeling like this…

May be down to the deterioration of my condition – the dizziness, which has been constant for some time now, seems to have become more intense, as well as the episodes of vertigo becoming much more frequent, and are often times are worse to deal with than the constant dizziness, especially when you take into account the visual disturbances – vision becoming foggy or blurry and unable to focus on anything, sometimes not even being able to recognise what I am looking at.

As well as that, my legs seem to be gradually becoming worse too – experiencing many ‘drop attacks’ in which my legs suddenly give way from under me, with no warning.  That is the one of the hardest things to deal with also – the unpredictability of it all – going out perhaps, not knowing whether my legs will collapse, and when you take into account that often I find myself often unable to get up after these ‘attacks’ making plans to go anywhere becomes very difficult.

Take one example: on a Monday, I volunteer for a local Mental Health charity, which I have done for a couple of years now.  So, on my way, my Dad takes me to a local supermarket to go and buy some lunch, and last Monday was no exception.  However, whilst  buying my lunch, my legs gave way, and like on several occasions found difficulty in being able to get back on my feet again as my legs were so weak, and felt as if they were trembling a lot, so consequently  my Dad had to take me back to the car and buy lunch for me.  Legs never really recovered after that, so felt as if I wasn’t much use at the Centre, but often is nice just to get out of the house for a few hours.

Later on, had another appointment with the doctor.  Basically, told him of all the difficulties I have been having, the seemingly progression and deterioration of the condition, etc.  And once again was told “unfortunately, with conditions like these it isn’t much that we can do, and  no drugs are going to help with the weakness…”, basically another way of saying “There isn’t anything we can do, you just have to live with it.”  Mum even asked whether there was any possibility that I may need to use a wheelchair in the future, and the doctor just nodded his head in agreement, that may be my future…  I was shocked and a little upset, as I honestly never really thought that I may need one, people have said that maybe I should, but never really thought that I may need to actually us one, more so for going out, as still need to use the muscles so they don’t atrophy.  But if I need one, then so be it, as there are worse things in life, hey?

I have been often told that I need to exercise and make use of the muscles as often and as much as I can, however, as I am unable to stand for very long, it makes finding any forms of exercise that I am able to do very difficult, my legs and problems with balance and co-ordination, etc. My exercise bike has been increasingly difficult to use as often feel that I am going to fall off, and the Wii Fit that we have does not often recognise me during some of the games as when you are required to stand still, my body is swaying back and forth…

However, I have recently bought a machine that hopefully may increase the strength in legs (although isn’t  guaranteed that it will work) and also keep me fit and in shape.  It is called an Aeropilates Machine  –  a machine that incorporates pilates exercises with a resistance machine….

AeroPilates 4695 4 Corded Machine and Cardio Board
AeroPilates 4695 4 Corded Machine and Cardio Board

“Pilates was invented by Joseph Pilates in the 1920s as a way of incorporating a full body workout to build muscle and core strength. Over time pilates has come to be the preferred means of exercise for a wide range of people from athletes and dancers to those with common household injuries like injured backs. It’s benefits are wide-reaching and provide not only fitness and toning, but also help with injuries that you might have. An aero pilates machine apply the basic principles and effectively ‘super charge’ your workout so that you reap the rewards of pilates with an aerobic workout that aids with blood flow and muscle growth.”

Anyway, I’ll be off now, doing some exercises on my new AeroPilates machine – fingers crossed that I will see some benefits soon…

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In Chronic Illness

Fighting the Battle…

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Hey Everyone

Haven’t posted in a while, for which I apologise for, but lately am finding things so tough as of late.

The symptoms that I experience with my condition – as I have mentioned before:

  • Dizziness
  • Stiffness and weakness in legs (Spastic Paraparesis)
  • Sporadic episodes of vertigo with visual disturbances such as double vision, tunnel vision

All these seem to worsening… for example, a couple of days this week my legs were so weak that I could barely stand, and as a consequence most of those days were spent in bed watching mind-numbing day-time television, or listening to audio books – I love reading but the visual disturbances were so bad that I really was unable to focus on a book, and after several recommendations from others in a similar position to mind, bought some audiobooks to pass the time when I am having bad times and unable to read.

My legs were trembling so bad, a feeling similar to when your legs feel like jelly when you are nervous, that I just was unable to stand for very long, so really was unable to do much at all and realised how much we all take for granted – going for a showers, making a drink or lunch for ourselves, and so on.  The dizziness was also very intense, as I have mentioned before the dizziness is constantly there, but the intensity of it changes from day-to-day, sometimes moment to moment.  The way it makes me feel is as if I am totally unbalanced, and unable to ground myself, and when standing I can literally feel myself swaying back and forth.  The episodes of vertigo, however differs in that they are episodic, and so come and go (although are becoming much more frequent) and with the vertigo comes the sensation of the world moving, for many it feels as if the room is spinning.  However, I would describe it as everything moving back and forth, and often includes tunnel vision.

As I was so bad my parents pushed me into making another appointment to see our local GP.. after some thought I have made one, although I just get this feeling that I am just wasting the time of the doctor, as it has already  been said that there is nothing that can be done, so it there much point in going?  Should I ask to see the neurological consultant again, even though they are unable to do anything for me?

And on top of all this – it’s also the emotional impact living with a chronic or life-long condition, the feeling of being alone, that no-one else understands what you are going through.  The isolation of being in a room by oneself, no-one to talk to…

Feelings of loneliness and isolation...

Through all of this, not being able to go by myself, in case of a fall or if the visual disturbances come on with no warning, leaving me unable to really focus on where I am (dangerous and could lead to an accident), it has left me very lonely and with no friends, apart from my online support network which is fantastic, but just wish that I could live a normal life, and do things with someone else such as shopping, or going for a cup of coffee, etc.

However this is the card I have been dealt, and maybe there is a reason why ‘this’ did happen to me., and am meant to do something with everything I have dealt with or have learnt from all of this… Now I just need to find the answer and what I am able to do with my life….

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The role of support and health communities for people living with chronic and long-term conditions…

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Hey Everyone

Sorry, I have not posted for a bit but I have been unwell as my Dad has kindly given me his cold – which has made me feel very unwell and extremely lethargic.

Today, I would like to discuss the role of support groups and other health communities out there for people, like myself who have chronic and long-term health conditions.  These online support groups and communities, for me, has been a god send – as I find myself feeling unwell all of the time, as well as having the dizziness 24/7 and 365 days a year and therefore unable to really leave the house on my own, a lot of my time is spent alone – leading to feelings of loneliness and isolation which can then lead to feelings of depression.

As a result a lot of my time is spent online where I am able to talk to others out there who, although might not have the exact same conditions as me, sometimes have similar symptoms or experiences as me.  Communities or ‘groups’ even exist on social media sites such as Facebook, where in fact I am a member of a several groups, some of which are for people living with chronic and disabling dizziness.  No one, so far whom I have met online, has the exact condition as me, however, this has not meant that I find them any the less useful, or not able to get support out of them – many of the people whom I have met have become great friends of mine, and can still relate to what I am going through in terms of the dizziness as they too are going through something similar.  One of the groups that I am a member of, even have Skype meetings, giving us the chance to actually talk to one another instead of constantly typing answers at each other!!

These sessions, are something which I look forward each month with great enthusiasm – it doesn’t just give me the chance to speak to others about what I am going through with the dizziness, and to gather information and support from these terrific women but also gives me the chance to have a laugh and a giggle with people other than my parents!  Don’t get me wrong, I love my parents dearly and they are a fantastic support, but it does get very isolating just speaking with them day in and day out.

I have also found another very useful too online – an online health community called PatientsLikeMe.  If you would like to know more after reading this then please find the link in the ‘Blogroll’ section.

Information regarding the community - how it works

PatientsLikeMe was founded in 2004, and provides patients with all kinds of conditions and is basically a health sharing website for people with a variety of conditions, hence ‘patients’.  Patients are able to enter data regarding their conditions – such as the condition itself, or even multiple conditions, symptoms associated with said condition or conditions and even the treatments that the patient has taken in the past as well as those treatments that are presently being taken.  In addition, every now and again, members are also asked to complete several questionnaires regarding their mood and quality of life as well as questions regarding symptoms experienced – by answering these simple questions members create helpful charts and timelines to enable users to watch the progression of their condition over time – using the site, members can also add their care team to their profile, to keep their doctors up to date with everything.  There is an even a tool called ‘instantme’ where in 140 characters or less are able to type in on how you feel that particular day – there are 5 options to choose from – ‘very good’, ‘good’, ‘neutral’. ‘bad’, or ‘very bad’ – and then all you have to type in is why you feel that way!  Simple!  Myself, I use the ‘instantme’ tool everyday, as I find it an invaluable tool to track the progression of my conditions and to see if there has been an improvement or deterioration in my symptoms.

Using the site you are also able to find patients just like you – well I haven’t, but that’s another story, but for conditions such as MS or Depression, there are many members with that particular condition, and can even search patients with the same symptoms as yourself, as well as searching for those with the same treatments, and even search for those within the same geographical location – or can even search for those using a combination of criteria.  And furthermore, using the tools such as the symptom or treatments reports you are able to learn and find out and see what others are experiencing – as well as being able to ask questions, share tips that you have picked up along the way and to support others using the forums – which they are many of as well as through a private messaging service.  Basically PatientsLikeMe is a great social media site, like Facebook for those with long-term health conditions!!  If anyone reading this has such a condition, I would more than recommend joining – even though I haven’t found anyone else with the same condition I am still finding it a very useful tool to track the progression of my health – and can even print out ‘doctors reports’ showing the severity of my symptoms and any information that I have entered to show them how I am doing.

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Mobility or Fashion?? Or Can We Have Both??

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Well, finally time for another post!

So far, have had a good week – my Mum has the week off, so we went together into our local town to do some shopping.  In fact, wanted some new make-up as am so fed up of people commenting “you look unwell, are you OK?”.  Off to Boots I went, and now just have a couple of products to now give me a ‘healthy glow.’

The shopping trip would have gotten a lot better though had my legs hadn’t kept on giving way on me, so consequently had a few falls.  One thing I haven’t mentioned before is I currently use a crutch – I had previously used a walking stick, but found as my legs became worse, the stick did not give me the support that I now need. I started using crutches provided by the NHS via my physiotherapist…

Then I came across a site by a great friend, called Cool Crutches. They are a British based company who offer an alternative to the boring and dull grey hospital crutches and instead give several different options of colours and patterns.  They are also so much more comfortable to use, and the crutch even comes with a removable and washable neoprene squidgy grip, which moulds to left and right hands so does not leave the users’ hands sore as what usually happens with ‘hospital crutches’.  And they seem to be more lightweight than the NHS crutches that I started with but are still solid and robust.  Although even they are robust still found my legs still giving way and as a result having several falls in the middle of several stores! Ouch!!

Cool Crutches

I think anyone will agree these are a fantastic alternative to the grey and lifeless crutches.  They are cool and funky, and look more of a fashion accessory than a ‘mobility aid’.  Anyone who does use any sort of mobility device know that even though they are practical and make life much easier – they don’t always look fashionable!!  But these are, and am sure they are other sites and stores out there that are offering something similar.  I mean, we may be disabled – but it doesn’t mean we have to look and feel disabled.

If any of you have any stories of cool, bright and funky mobility aids, please get in touch!!

Image: Courtesey of @CoolCrutches

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How I Got To Where I Am…

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Well, thought it was important to give some more information regarding my journey of me and my condition.

I was born in 1986.  Odd thing was, that when I was first-born the doctors thought there was something wrong me then… a nurse noticed that I held my legs rigid, which apparently is something which newborn babies are not supposed to do…

The doctors sent me for a brain scan when I was 2 days old… but nothing was found.

So, in any case had a pretty normal childhood, well, apart from my intense phobia of heights.  All of the experts say that phobias are learnt, however, I never had a bad experience with heights… strange thing is when I was a baby, my Mother took me for a check-up at the doctors.  When she tried to put me on the bed that you have at doctors’ surgeries, I started to scream and instantly grabbed onto my Mum  and wouldn’t let go.  Instinctively, she put the baby mat on the floor and laid me down… and I stopped screaming!!  Seems as if I have had a problem with heights from birth.

I remember from childhood, I also had a problem with standing on anything which is even slightly high up – even those long benches you find in gymnasiums which aren’t even that high from the ground… it was like whenever I stood on one I was unable to focus properly and felt like everything was moving sideways…

Then at 8 years, old during a trip to a DIY store I had my very first dizzy spell… felt as if everything was moving and that if I hadn’t grabbed onto something I would surely fall.  Had a few attacks after that, so was sent to the doctors’ for tests… all came back normal.  Noticed that the majority of dizzy spells that were happening to me was brought on in places which had wide open spaces and especially those with high ceilings.  Even now I have major problems being in places which are very open and those which have high ceilings… the current train of though of why these type of places bother me is some a problem with perception and how the brain processes information being received from my surrounding environment.

Anyhow, as it became more frequent I became panicky and anxious when these attacks would occur – I was only 8 and hadn’t a clue what was happening to me?  And as the doctor’s couldn’t find a cause I was labelled with an ‘anxiety disorder.’

Fast forward several years, and the dizziness had become much more frequent and wasn’t able to go anywhere without the aid of another person – managed to complete a Psychology Degree but had to have support to do so, such as having a ‘Buddy System’ in place taking me from lectures and a designated place where I was picked up by someone.  As the dizziness became more frequent, I knew deep down there was something wrong other than an anxiety disorder and had to fight to get referred to a neurologist who eventually diagnosed the long-standing brain stem lesion.  And in terms of the spastic paraparesis – have always felt stiffness and weakness in legs especially during sports at school and when walking – but always thought it was normal as I hadn’t know anything different!!

Anyway, that’s all for now.  Please feel free to leave a comment below.

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