Hello! In today’s post, Kat gives her Confessions of a Spoonie!
I’m Kat. In 2010 my life changed dramatically and has never been the same since. Over the past 7 years, I have been diagnosed with many spinal conditions, all of them debilitating in their own way. I work part time as an IP Administrator for an Oil Company, which involves looking after the Patent & Trademark Portfolio. My personal/home life is just as hectic. I am married to my best friend Michael, who I met when I was 16, and we have been together ever since (16 years and counting!!). We have 2 Bengal cats (Fergie & Jessie) and 2 working gundogs (Bubba & Hamish). Life is very busy and we never seem to stop, but we wouldn’t have it any other way. I started blogging over 2 years ago now, as way to share my thoughts and feelings about my chronic conditions, I guess as an outlet, but also to help other people that are in the same situation as me. My blog has been such a great way to meet/talk to new people from all over the world. I never want anyone to feel alone!
Blog link: chronicallycomposed.wordpress.com
What condition/s do you suffer from and when were you diagnosed?
I suffer from various spinal conditions, which have all been diagnosed over the years since 2010. I have Degenerative Disc Disease, Lumbar Spinal Stenosis, Enlarged Facet Joints, Facet Joint Arthritis, Facet Joint Hypertrophy, Hip Bursitis and Failed Back Syndrome. I also have Chronic Golfers and Tennis Elbow in my right arm, which has resulted in the loss of function of my hand (minus 2 fingers!!)
What are the main symptoms you suffer from?
Mainly my symptoms are deep rooted pain, fatigue, stiffness and nausea.
What 3 things have you learned about your condition since being diagnosed?
3 things I have learned since being diagnosed are: I am not the same person as I was, ability wise, I now have to adapt round things; I am stronger than I ever knew I was; Spinal problems are more common than I ever realised.
In what way has the NHS supported or not supported you?
I have great Specialists who help me, who are also working for the Private Health Sector, but other than Physio and OT on the NHS, nobody else has been of any help to me. MY GP’s are far too quick to judge and send me packing with medication, ignoring the fact there is something wrong. One even told me I was just “fat” (his exact words), when in fact my disc was on my spinal cord.
What is the hardest part about your illness, in your opinion?
The hardest part of having this illness is other people. By that I mean, trying to tell people how you feel, or asking for support when most people don’t know how to react or even how to listen. Trying to show people and teach them about your conditions is so very hard.
List 3 phrases you hate hearing off other people about your condition.
“Have you thought about losing weight – I think that’s your main problem. Lose weight and all your problems will go away”
“I read this article about a woman, and she did X and she’s now cured”
“Oh my cousins sisters brother has the same, and he did X and he’s fine now – maybe you should try it”
List 3 things you wish people would say/do instead.
- Ask how you are, but with meaning and intent behind the question – to be prepared to listen to the answer and not “zone” out when it gets too boring to listen to.
- Check on you from time to time – even if it’s just a “hello – how are you?” – be proactive in contacting me, rather than me always having to make the conversation/first move all the time.
- Think before they speak. I don’t need to know about a miracle treatment that your cousins’ best friends sister had. Its sometimes really insulting that you think I sit here with my head in the sand, and haven’t looked in to treatments.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
Not really any cheats, but I try to rest as much as I can, and if that means an afternoon nap, then that’s what I will do. Its probably not the healthiest choice, but I also drink Lucozade now and then (not all day!) as well as keeping myself hydrated with water.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
I taught myself to knit recently and have been making a few things out of what I knit, hair-bows and brooches. I have also started making cards, with different designs and trying to sell them on my Etsy shop. I am also trying to get back in to reading, as I have so many books to read, but that’s sometimes difficult depending on my dizziness and nausea – so my reading list keeps growing and im not getting very far!
What do you do? Work, study?
I work for an Oil and Gas company, in the IP (Intellectual Property) department. This means the company Patents & Trademarks are looked after and maintained by myself and the other people in the team. I have to drop to part time hours a few years ago, and its hard going, but I try to make it work, and I do enjoy my job – it’s the only thing im clinging on to from my “old” life!
What are you plans for the future?
I want to get a firm diagnosis for my health and to stop being fobbed off all the time. I also want to create a local support group for people in my area, as there doesn’t seem to be anything for people in the same situation as me.
Personally, I’d like to get in to the Gundog training more. We have 2 gundogs which we are training at the moment, and I’d really like to get in to this more, perhaps have other dogs to train. But I’d also love to have a cattery/kennel too – plus have a whole zoo of animals (sheep, pigs, goats, chickens etc) – something to keep me buys – more than I already am.
Is there anything you would do differently since being diagnosed, and why?
I’d not be so hard on myself. I give myself such a hard time about not being able to do things, and I think that’s where I let myself down. I need to stop focussing on the past and move forward and live the live I have been given. Nothing good comes from looking back.
Has your illness taught you anything about life?
I am stronger than I ever thought I was. Also the so called “friends” aren’t friends. When the going got tough, they got going. I can only rely on a handful of people now. Never rely on people you thought were friends, its only going to hurt when they let you down.
What advice/information do you wish you were told when you were first diagnosed?
I wish I was told that rest and recovery were as important as anything else I was told – my body needs to rest and recover to keep going. Also, nobody ever warned me just how exhausting and physically draining having Chronic Illness’ would be – there is so manual or rules to follow, I just have to make them up as I go along, and although that’s ok – it would have been nice to be told that back in the beginning – perhaps a warning!
What would be your main piece of advice for people who has just been diagnosed with your condition?
Don’t give up. Keep going, no matter how hard it gets, you have to keep going. It’s going to be so hard in the beginning, but do not let anything or anyone get you down. There are so many people going through the same thing, so NEVER ever feel alone, and never feel like you are struggling. Reach out and talk to someone, even if that someone is a stranger, never feel alone.
Thank you so much Kat for getting involved! If you liked this, please take a minute to check out Kat’s links at the beginning of this post!
- Take a look at the recent Outside Looking In on my blog!
- Jodie will be posting another Confessions of a Spoonie on TUESDAY 18th April!
- I will be posting Kat’s husband’s Outside Looking In on THURSDAY 20th April!
If you would like to get involved, you still can! Just email me at firstname.lastname@example.org and we can get something organised!