Confessions of a Spoonie: Jodie Barber
I’m back for my very first ‘Confessions of a Spoonie’, with these questions being answers by Jodie! If you want to take a look at her partner’s ‘Outside Looking In’ responses, you can find them here, and you can also see my confessions over on her blog too!
Hello, I’m a 21 year old UK blogger (Its Yet Another Blogger) currently working in Human Resources before starting my MSc Global Human Resources Management degree at Newcastle University in September 2017. I suffer from Rheumatoid Arthritis, Anemia as well as several other Musculoskeletal & blood disorders. I’m determined put some weight on and improve my health & wellbeing. Gluten free achieved, which has made a huge difference to my well being already, that’s one step closer to my end goal – Vegan! Slowly but surly Im managing to take back control of my health and actually put some weight on!
What condition/s do you suffer from and when were you diagnosed?
Rheumatoid Arthritis and several other musculoskeletal disorders which came along at the same time. First diagnosis 2011, official diagnosis 2013.
What are the main symptoms you suffer from?
Joint stiffness, pain and swelling, anaemia & fatigue.
What 3 things have you learned about your condition since being diagnosed?
- There are a lot of other factors involved – it’s not just Arthritis, there are other conditions linked to it that expose themselves throughout diagnosis that either are a cause of Arthritis or helped caused it.
- My conditions is extremely bipolar – one minute I can be fine, then all of a sudden I can be in crippling pain or in some weird state of rigor mortis. However, I have been able to pick up on some of the signs of when things are going to change which gives me a bit of prep time!
- Though this diagnosis affects my whole body, it still surprises me just how much my body can handle, yea okay not all the time but the sheer strength to power through at times still leaves me speechless. It’s always reassuring & motivating.
In what way has the NHS supported or not supported you?
As much as I am truly grateful to the medical community & NHS for everything they do, I do still get quite frustrated with them. From the moment my investigation began until I turned 18 I was basically told that it was growing pains but they were severe due to me being athletic, but I would grow out of them. However others went the complete other way I stated that since I was not recovering it could be serious and leave me wheelchair bound. I had 4 ‘false’ diagnoses before they actually realized it with Rheumatoid Arthritis.
Since being diagnosed things have improved, they’re very understanding to my needs and developing conditions and always advise me on new medication or treatments. However when going through major flare ups I do again get mixed responses of “don’t worry it’s just a flare, it will eventually pass” to things like “at the rate this is going, you’ll probably be needed a permanent wheelchair in the next year or so”. But they’ve been saying it for years no so I just take it with a pinch of salt.
What is the hardest part about your illness, in your opinion?
The fact that it’s bipolar & Invisible– nothing worse than feeling great and being able to do all of these things with your friends or family then the next moment or following day you can’t. Sometimes people don’t quite understand how I can be fine one moment and not the next and with them not being able to ‘see’ the illness just adds to all of that.
List 3 phrases you hate hearing off other people about your condition.
- “You’re too young to have Arthritis” or “That’s only something old people get” – every time I hear this I just want to explode!
- “God you’re too skinny, put some weight on! Why aren’t you eating?” – Thanks for the confidence boost! This is mainly from family. No I am not trying to lose weight. Yes I drop weight easily due to my conditions. Yes I am aware and trying to put weight on and YES, I am very self-conscious about it.
- “Maybe you should just exercise” – It’s not that easy, it’s not that I’m lazy and yes I do need to exercise but it’s a bit more complex than going for a run or lifting weights. Plus, it kind of ties in with what I said above about struggling to keep weight on.
List 3 things you wish people would say/do instead.
- •“I didn’t realise it affected younger people, please tell me more” – or something like that, rather than taking it as fact that it’s an old person’s disease, I wish people would educate themselves by actually asking!
- “I know I don’t need to but I want to” – I always appreciate it when my partner, friends or family say this, whether I’m struggling to move, walk or just carry something, it warms me to know that they want to help & be involved.
- “Do these plans work for you? We can make changes if not” – It’s always nice when my friends/family ask to make sure the plans made work with me, it’s just another reassuring point that proves they genuinely care.
Do you have any cheats/tricks to get you through the day or to help you complete certain tasks?
I’m not too sure, I definitely think being organised helps. Plan out your week so you know when your busier days are so you can pace yourself for that. Also, especially with certain medications messing with my body I found that dieting makes a huge different to my energy levels and overall mood. Cutting out Gluten and using dairy alternatives / less dairy products has been the best decision I ever made.
Have you picked up any new hobbies or activities since being diagnosed that you didn’t think you would?
Well, obviously blogging! Though I had started blogging for a completely different reason, connecting on my blog and different social media platforms has been fantastic and not something I would have ever seen myself doing. Also Pilates, which is totally random but it’s a nice combination between my physio exercises & muscle strengthening exercises in one class rather than going to 100 different classes.
What do you do? Work, study?
Currently working as a HR administrator after graduating from University with a BA (Hons) Business Management & English Studies degree in 2016.
What are you plans for the future?
I will be returning to University to complete an MSc Global Human Resources Management degree this coming September. After that, probably try to work my way up the HR ladder and maybe spend a little more time trying to grow my Blog.
Is there anything you would do differently since being diagnosed, and why?
Two things, both completely opposite ends of the spectrum.
1 – Wish I had slowed down. I was stupid enough to think that I wasn’t ill and kept pushing my body, which in turn made me deteriorate quicker. If I’d of trusted the doctors and my body rather than ignoring it all, I probably wouldn’t be as bad as I am now.
2 – At the opposite end, I went through a horrid stage of depression because of it and I hit rock bottom. I wish I had just carried on as normal because it really is not as bad as what I had made it out to be. Yea it’s a bummer, but it’s not the end of the world!
Has your illness taught you anything about life?
Oh goodness, so many things to choose from! It’s definitely taught me who my real friends are and who I can really count on, even when it comes to family! But also, it’s made me realize how lucky I am and how grateful I should be for the life I have been given. I have a wonderful partner, the most amazing friends & selected family, I have had some great opportunities with many more to come, what’s not to love?
What advice/information do you wish you were told when you were first diagnosed?
It really isn’t the end of the world! Yes there are going to be hard times but it will get easier. Don’t let every flare up get you down, I promise they will pass.
What would be your main piece of advice for people who has just been diagnosed with your condition?
Take everything with a pinch of salt and trust your body. At the end of the day, only you know exactly how your body is feeling & how it works so trust it. It’s okay to have to cancel plans or take it slow, whatever works for you is all that matter. But in the same breath, be open to new ideas and suggestions for treatments etc. You never know, something you didn’t expect might just work for you. And for goodness sake, it is okay to depend on people, please don’t feel you have to face it all alone!
- On TUESDAY 4th April, Jodie will be posting the first official ‘Confessions of a Spoonie’ from one of our guest posters!
- On THURSDAY 6th April, I will be posting the first proper ‘Outside Looking In’ posts!
- Don’t forget to check out the posts from the first week, on Jodie’s blog, where you can find my confessions, and Jodie’s partners insights, and also on my blog, where you can find my partner’s insights!
Remember, if YOU want to get involved, please email me at email@example.com to let me know which series you are interesting in participating in and I will send you the questions!