Waiting and a balancing act.

If there is one thing that I have learned how to do over the last year of feeling dizzy, it is to learn how to wait.  It is so very, very frustrating, knowing that there is something wrong, and firstly not knowing what it is, and having to wait to find out, then waiting for further tests, further appointments and further referrals.  I suppose one blessing to be taken from all this waiting, is that it obviously isn't a life threatening condition, because then things move alarmingly quickly. 

There are drawbacks to this waiting, and it is how to address those, that I want to touch on today.

First of all, there is the intense frustration that your life is being put on hold, whilst you wait for the process of tests, diagnosis, treatment to be gone through.  Of course, to you, and those whose lives are also impacted by this condition you have, your life, and the ability to live it to the fullest has the utmost importance.  Plans have to be cancelled, or at least postponed.  Life has to adapt to the limited abilities of the patient, all whilst trying to keep a positive outlook on life, which on the bad days, is tough.  But learning to live within the confines of the condition to the best of your abilities is key to this.

The adaptations I have had to make to my life are many.  From stopping driving, to walking with a stick.  Having to avoid noisy environments (and boy, is the world noisy when you are sensitive to it!), and when that isn't possible to wear my DUBS earplugs.  Being careful not to raise my heartbeat for fear of making me dizzy, and that can happen through exercise but also through emotions.  Getting upset can make my symptoms go through the roof. 

When you are aware that going out, experiencing noise can make you dizzy, it is easy to become stressed about it, and that raises your heartbeat, and therefore makes it even more of a self fulfilling prophecy.  It would be easy to just stay at home, in the quiet, and remain fairly ok.  But that is most definitely a way of putting your life on hold, becoming resentful of the condition, and a path to isolation and depression.  Yet on the flipside, going out is exhausting.  You realise how bad you are when you go out into the normal world, and can't walk straight, or have to stop because everything is moving about so much you can't focus.   So, I do still go out, I walk the dog, even when it is the last thing I feel like doing.  I go out to restaurants, and take my earplugs with me.  I go out to events that I feel I can cope with, even if I do have moments where people could quite easily mistake me for being drunk, as I struggle to stay on my feet.  Because that is what life is about, it is not about hiding away (although I need to that from time to time), it is about doing as much as you can, within the constraints that are given to us. 

Another balancing act I am contending with at the moment, is that of weight.  Given that raising my heartbeat makes me dizzy, I have consequently become less active, and the weight has started to pile on.  To the point of me being heavier than I was when I was 9months pregnant with my largest baby!  To be fair, it is not all down to the SCDS that has caused the weight gain, but it is certainly making it very difficult to shift it.  So I have enlisted the help of a fitbit.  Which allows me to assess how many calories my pretty inactive body needs.  I can see this being a great help.  I feel in control of something at long last, and despite whatever other struggles my body is contending with, I can now start to make it the best version of itself right now.

It is this idea of being the best version of yourself that I find is a good motivator.  Yes, I may have been fitter, thinner, more stable, more independent a few years ago, and yes, I may well be like that again in the future.  But for now, I am going to make myself the healthiest I can be, within the constraints, healthy in body and mind. 

A wake up call.

This illness has forced me to make decisions about daily life.  I had to decide to stop driving, I've had to choose carefully where I go, and what I do.  I've had to cut back on what work I take on.  By doing these things I can generally have a days that are manageable.  Sure, I might feel a bit off, and some days are definitely better, or worse than others, but in general I am ok.

 So it is easy to forget that I do have a condition that affects me as much as it does.  Sometimes you go and do something and it makes you realise that things are most definitely not right.

Yesterday, I went to a small demonstration, as our local hospital's maternity unit was being shut.  A cause I felt very strongly about, so I figured I would at least show my face.  I had taken my stick, but forgot, of all things, my ear plugs.  I was stood for 2 hours, with cars tooting, and sirens going off at times.  Before I was ill, perhaps the most I would feel from that would be sore feet, and a bit tired.  But, apart from staggering a few times, and suffering for the loud noises, I then started to feel very off after two hours, and had to make my way home.

Getting home was hard, I was staggering, really struggling to walk in a straight line, and my vision was really distorted.   All I could think was how this is not how I should be.  I should be able to do these things without feeling so unwell.  How I need to get better.  An hour of peace and quiet when I got home was enough to rejuvenate me enough to go do the school run, and I am glad that I could bounce back so quickly.

So today I am back to a quiet life, and I am doing ok.  But life cannot be reduced to this all the time.  I have to remember that when life gets busy, and noisy, I will feel unwell.  Another thing I have to remember is to take my ear plugs with me!