NHBPM Day Twenty-Two: Changes…

It’s Day 22 of ‘National Health Blog Post Month’.  One of today’s prompt asks us to write about we are thankful for – as I have already done this in a recent post (Day 5: Giving Thanks!) I have decided to use the second prompt.  The second prompt asks us to write about change.

Well, my life at the moment are going through some changes.  The biggest change is that I am going out more, and to new places, thanks to my new personal assistant whom I was able to employ thanks to a grant provided by the local council through a scheme called ‘Direct Payments.’  When I am out with my Personal Assistant, I am not just visiting places that I need to go – but am also starting to visit new places, or places that I have not  been able to access for a long time.  And for the first time, I do not even have to rely on my parents to buy essentials for me, such as shampoos and conditioners, shower gel for me anymore – I can get them myself and even decide on the brand for myself!

                 

The house – outside and inside has also seen some changes this week.  A few weeks ago, I had a visit from a Community Occupational Therapist, to have a chat with me and to look around the house, and whether any adaptations could be recommended to make my life easier moving around the house, and of course, to prevent accidents.  For example, outside my house there are steps leading to the front door, steps which had no rails to hold onto – this for me, causes a real problem, as when I need to circumnavigate steps or stairs of any kind, I need something which I can hold onto, to prevent stumbles and falls, especially when the visual disturbances presents itself as I cannot always clearly see the steps to safely walk down.  Before now, i used to walk down a little grass banking at the side of the house to get to Dad’s car – the Community Occupational Therapist saw a potential danger with doing that – as if when in the case of heavy downfall (which happens a lot in Wales!) the grass will get slippery, and leads to the increase risk for a fall.  So, she referred me for some adaptations to be done to the house – such as external rails for the outside steps, an internal rail for the stairs (we already have one, but the OT thought a second one on the opposite wall would be beneficial) , and a drop-down rail for the bathroom.

 

              

These changes have now all been installed and ready for action – and are already been incredibly handy for me!

Another change that has happened for me lately is the move from using a crutch all the time when I am out and about to using a manual wheelchair.  The reason for this is the worsening of the weakness in the legs, which for me leaves me unable to stand or walk for long periods – obviously when I am with my Personal Assistant, this requires me to be out for pretty much the entire day (around 7 hours), and so need a wheelchair to be able to manage this.

This doesn’t come without its problems however.  One of my main symptoms, as you all know by now is the constant dizziness.  The dizziness, can still be really bad, even when sitting down; a symptom which really won’t go away.  And so the dizziness, is causing a real problem when I am using the wheelchair – being pushed and seeing everything whizz past, doesn’t do anything to help the constant movement that I already live with – and almost makes me feel really unsafe sitting in the chair.  Using the wheelchair going into shops is also a problem, as it causes the need to look up to see items – and tilting my head back to look up is one of my triggers – and can set the dizziness to high!!

 

 

 

I would love to hear others’ stories about being new to using a wheelchair and perhaps some tips to help me adjust to the new experience of using a wheelchair.  Any tips would be greatly appreciated!!

How do you solve a problem like…a high ceiling?

Sorry for the lack of an update this week – truth be told, I haven’t had the greatest weeks with most of it spent lying on the sofa with the comfort of a quilt and watching endless hours of television (or at least trying to!!) feeling particularly dizzy, weak, nauseous and with frequent episodes of the ‘room spinning’ motion.

It started Wednesday evening and I believe that the deterioration in my condition was due to the afternoon I spent at ‘Life 4 Living’; a local group I attend every week which promotes enjoyment, positivity and friendship.  Don’t get me wrong, I love my time at the group, and is something that I really look forward to, however, this week we had a local singer coming to the group to perform and so we left the confines of our usual room to conduct the session in the Day Centre’s Main Hall.

Now as I may have mentioned before that one of the triggers that seem to affect me much more than anything else are high ceilings.  The very first dizzy spell I experienced was in a DIY Superstore with vast ceilings and being in a place with high ceilings can bring on an attack of vertigo, causing my vision to become out of focus, balance becomes even more unsteady.  I have no idea why these places affect me so much but they just do – if anyone knows any such explanation I would love to know!!  The ceiling wasn’t particularly, much lower than what you would find to expect in a superstore for example, but as there was dips within the ceiling itself – progressing from higher to lower and so on just threw me for a loop – as if it was too much visual stimuli for my brain to process!

Unfortunately for me everywhere and every new store that is opening up seems to be big vast and open as well as the problematic high ceilings – as if the world I live in now no longer is fit for me, a lot of places coming out-of-bounds for me and my condition, nowhere being accessible for people ‘like’ me.

My Nemesis!

We had prior warning to the change of venue and knew what it was like in there beforehand so I was able to bring my Mum along for support and to help me if taken unwell. On a positive note, I did manage to stay in the hall for the entire group session (close to 3 hours) but even so I uncomfortable and unwell the entire time, and my balance was really bad also – thank god Mum was there to get me drinks and to help me get my food from the buffet.  As much as I did want there, I just wanted to enjoy myself with my Mum whom I do not get to go out with anymore on account with the severity of my symptoms as well as the awkwardness of spending a long amount of time out causes due to the weakness in my legs, and Mum was also looking forward to seeing the singer perform so didn’t want to spoil it for her.

The most embarrassing part came towards the end of the afternoon when coming to leave my legs seized up on me causing me to crash to the floor!! But still a good time was had by all!

And since then, I have really gone downhill, legs weak I have hardly been able to stand and generally feeling weak and lethargic – as if those three short hours just took everything out of me.  So here’s to a quick recovery in time for volunteering Monday and especially to the next meeting of ‘Life 4 Living’!!

Unsure of the Path I’m On…

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

“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…

Fighting the Battle…

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….