Living with a chronic illness….

Living with a chronic illness….

For all of my adult live I have never felt ‘well’.  As I’m now 40 I feel that I need to tackle this head on.

Over the years I have tried to find out more but have been told my various doctors that; it all in my head, its my age (I was 36 at the time!) etc etc.  So I stopped pursuing it as I couldn’t face trying to get someone to listen.

So how do I feel?  Why do I rarely feel well (if ever)?  I have various symptoms which range from extreme tiredness, various aches and pains around my body, sensory overload when it comes to noise, migraines, a ‘foggy’ head and many many more besides.   I struggle with normal activities in daily life such as taking the kids to the park because I rarely have the energy to do so and I HATE it with a passion.  Feeling as though you are lacking as a parent is hard.

Last January I was poorly with a tonsilitis type illness which floored me. It was during some routine bloods that I was diagnosed with glandular fever.  Most people would associate glandular fever with teenagers, however I was almost 39 at the time.  For those of you who has had glandular fever you will know that deep deep exhaustion you feel.  I was off work for 4 months as the smallest of activities – some days that was making lunch, just wiped me out.  It was a very frustrating and emotional time for us all.  James was having to parent for the 2 of us and I missed out on family activities and get togethers as I just did not have the energy for it.  There were days where I would literally sleep all day.  James would take the kids to school and nursery and mine and James’ parents would pick them up and look after them until James was home from work.  For the most part of 4 months I was absent from life.  I was terribly tough on us all.  There are still times when I become unwell with a virally type illness that James and I panic and think its making a re-appearance .

Fast forward just over a year and I became ill again a couple of weeks ago with a tonsilitis type illness.  Again, it took the wind out of my sails and my body took a couple of weeks to recover.  So this was the moment where I decided enough was enough, I needed to sort this and find my way to understanding what is going on with me.  I had what felt like a gallon of blood taken for a ton of blood tests and had the results of those last night.  The all came back normal.  One of the tests was a thyroid function test (TSH).  I had been reading a fair bit on the internet about the fact that a regular TSH screen did not necessarily go into enough depth in terms of thyroid problems and so I discussed this with the Doctor last night.  She informed me that the NHS do not offer more in-depth screening because there was little evidence to show that any of the other screening and treatment had any effect on clinical symptoms.  Therefore the numbers on the tests would change but the overall impact to the patient’s well-being was negligible.  Being a nurse and health visitor, I’m all about the evidence and so I decided not to pursue this further.

Over the years I have researched my symptoms and have wondered if I have either fibromyalgia or chronic fatigue and the GP I saw agreed that these were most likely the explanation to my long list of symptoms.  I now have a plan of action.  I am to go back and have further blood tests in 3 weeks and if they come back as normal then I shall be referred to the Rheumatology Hospital in Bath to have further investigations and hopefully a diagnosis.

I know that with either of these possible diagnosis’ there is no magic wand or treatment even its a matter of managing symptoms and learning the best way to live with the conditions.  I’m Ok with that.  I just want to be able to understand how I feel better and know how I can help myself in daily life.

So I lift my coffee to those of you who are living life with a chronic illness or supporting someone who does.  We can do this!

3 Comments

  1. Tara Rumba August 12, 2017 / 6:27 pm

    I know exactly what you’re going through. I have ME/CFS and have done for nearly 5 years. That’s why I started blogging…
    I hope you get a diagnosis soon so you can get on with your life.
    Wishing you all the best
    x Tara

    I have started a health bloggers booster group on Facebook, most of the members are on some kind of chronic illness healing journey. You would be very welcome to join us if you like> https://www.facebook.com/groups/113019256028103/

    • thekingersandi August 12, 2017 / 6:52 pm

      Thank you! It really sucks doesn’t it? I’m solo parenting this weekend & I’m running on empty, it ain’t pretty!

    • thekingersandi August 12, 2017 / 7:01 pm

      Oh & I’ll definitely pop over to the Facebook group, thanks!

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