Reflections on 2018: Living with an invisible illness

Living with an invisible illness

I won’t lie – much of this year has been pretty terrible

For a long part of it I was very ill, and didn’t know why. Then it was about self diagnosing myself and managing life and the symptoms of reactive hypglocyemia and feeling like my body was imploding every two hours. After that followed many medical investigations because when you’re living with an invisible disease, sometimes it can be VERY hard to figure out what exactly is going wrong in your body.

First there was the ECG, and then the ECHO scan, because they thought it was my heart. Then there were the barrage of blood tests: I have had four individual rounds of blood tests over the many months which may not sound a lot but in terms of vials of blood, I have lost count how many have been taken. 20? 30? 40? Who knows.

Finally, I got myself back into a sort of “working order”

Where at least I could function on most days and after months of waiting patiently, I finally saw an incredible Endocrinologist who took one look at my case history from the past five years and admitted that I was a bit of a mess, and rather than shuffling me out of the door like so many others had done before, took me under his wing and went on a mission to find out why the heck my body has been so topsy turvy the last year.

Just when I thought things were looking better, a new raft of symptoms appeared, my digestive system gripped in the hold of stabbing pains and contractions like I had never know before. It lasted two weeks. Yet more medical appointments? Was it gallstones? I went for an ultrasound. They couldn’t see anything – no nasty lumps and bumps THANK GOD. Just another part of the invisible disease probably. And eventually the whole thing subsided.

Living with an invisible illness

I have learnt to accept all this weird stuff my body does

as “just another thing”. Because when you have an invisible disease, that’s the only thing you can really do because thinking about it all is totally exhausting.

As I began to get a shadow of my former self back, life had to change. I realised I had shrunk into a total recluse over the course of my illness, and I had to get back out there. But evenings were a no no, because I was and still am utterly exhausted every evening – whether I sleep or not is another matter – and I practically turn into a pumpkin at 8pm every evening!

I had to learn to make the most of the days when I felt good

Because I never know when they are, or how long they would stick around for. As it stands, I’m still waiting for all my test results but these things I know:

  • I definitely have reactive hypoglycemia – during the glucose tolerance test at hospital after two hours of having the glucose test my body went into meltdown mode – it definitely can’t tolerate glucose!
  • I am a lot closer to my former self than I was when all this kicked off, and for that I have to be very grateful. But it takes hard work and extreme discipline every day for that to be the case and I can never take that for granted. Ever.
  • I still have my off days, the days when I probably seem like a total flake because I have to excuse myself from previous commitments, but if there’s one thing I have learnt when you have an invisible illness is that self kindness and self care is EVERYTHING. I know some people might not get it, but I actually don’t care – because I know I don’t have to prove anything to anyone.

In all of this, there are some amazing people I want to thank

…who have helped to get me through the dark days, and who have guided me through to the brighter days.

Living with an invisible illness

Firstly my mum

Mum – you have been amazing. You are not well yourself yet you are the one who has been there with me, worrying for me every step of the way. YOU found my amazing consultant and for that I am forever grateful. You brought me endless supplies of chicken soup and nutritious food so I could start getting back to a “normal” weight. You endlessly checked on me, and nurtured me back to full health, while you were battling on your own. Words can not express how grateful I am to you for your gratitude.

Mr C

You have been my absolute rock. You have patiently and solidly stood by me all the way through, and while others thought this was a figment of my imagination (the hospital tests proved otherwise  – hurrah!), you were there, always there, doing whatever needed to be done. You picked up the slack as I struggled to function with life and mum duties time and time again. You put your life on hold for me. I don’t know how I could have got through all this without you.

My daughter E

E, I know you are not reading this now, but one day I hope you will. You are only five but you have showed such amazing compassion and feeling throughout this whole thing. It can’t have been easy for you seeing your mama turn into a ghost – thin, frail and unable to function – yet you tended to me with teddies, and showed tenderness in your recognition of my ability as a mum even when I felt absolutely useless. I’m so proud of the girl you have become.

The Mommunity

I am so lucky to have an amazing community of local mums around me. My mommunity may have come a bit later that I would have liked in mama life, but now I feel very lucky to have it. The mums who banded around me providing me with practical help when I needed it so desperately. I want to give a special shout out to Vicky, Zairha and Janine because you have literally been my heroes swooping in to help on different occasions so thank you a million times over.

All the amazing characters I have met along the way

Through all of this, and all my medical appointments, I have met so many incredible people who have shown the true spirit and strength of humans. The 90 year old lady who was battling with the same condition as me but was so brave and smiley throughout it all, the man whose wife required a kidney transplant and entertained us all in the waiting room with magic tricks while he underwent a barrage of tests so see if he could be a donor. The list goes on!

Living with an invisible illness

All those who have helped me on the road to recovery

My incredible medical herbalist Nicky Wesson at The Pavillion Practice who has taught me the true medicinal power of herbs. This is not the first time she has helped to pull my body out of chaos using the power of herbal medicine, and I truly don’t know what I would have done with her. I really wish more people would explore the medicinal herbal route for their health conditions because I truly believe it is omnipotent – I’ve seen it first hand after all.

My amazing acupuncturist  Dr Ping Ping! I know acupuncture is not for everyone but I truly believe that her wisdom and skill helped set my on the right path in those early days when I was so ill. Proof that acupuncture really can turn your health around.

My Endocrinologist Dr Rodin at the Endocrinology Unit at St Helier Hospital who was the first person to recognise that I needed investigating thoroughly.   I would probably still be battling with my “interesting constellation of symptoms” as he put it, if it weren’t for him.

My talented Mindset Coach and now good friend Jose Ucar at Finding Excellence who I connected with thanks to my sister Maya of DeepDownDirty when I was just starting to come out of my dark days who has helped me get back on course to being the person I want to and can be again. He has helped me grow so much over the last few months, and help me understand the changes I needed to make to feel fulfilled and believe in myself again because the health battle had really knocked my confidence.

I also have to thank him for making me realise I needed to get out and meet people in real life!Because of him my life has also become enriched with the power of networking and I really want to give a special shout out to the amazingly supportive community that is Fabulous Women that I am now a firm part of and have met so many fantastic supportive people through.

So as you can see, although this year I have been dragged through a few bushes to say the least, I am closing this year with this post, full of hope and positivity for what’s to come in 2019.

Living with an invisible illness

And of course, I want to thank YOU all of my readers for being alongside me all of this year as always because without you, Motherhood: The Real Deal would be nothing.

This will be my final post of the year so I want to wish you all a fantastic and restful Christmas and a very happy new year, and I’ll see you all again on the other side in January 2019! Big hugs and kisses to you all,

bathroom refresh

 

 

8 comments

  1. What a beautiful and emotion filled post! I’m so glad to read that you are almost back to your former self, but I’m sorry that you’ve had such a tough year. Sending you lots of good health and positive vibes going into 2019 🙂

  2. This must be so hard when noone can see that you are struggling either. We are so quick to pass judgement on people when what is ill is not obvious and I hope you feel really better soon xx

  3. It sounds like you have had a really rough time this year but I am so pleased that your are feeling a bit more in control now and that you have such an amazing support system! I hope 2019 is a much better year for you and you be really kind to yourself x

  4. Oh hun, you really have been through the mill. I do hope medicine and science prevail to find out once and for all what’s up. And then that you get whatever necessary to bounce back to full health. I’ve always loved your blog from the early days and wish you a very Merry Christmas and a Happy New Year Xxx

  5. I’m so sorry you’ve had a tough year, it’s hard to think that people are struggling when you don’t realise. Glad you’re starting to feel like your self again, here’s to 2019 being a better one.

    Katie xoxo

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