Diary of a Spoonie.

+𝑱𝒐𝒓𝒅𝒊 | 17 | England. Personal/chronic illness support sideblog. Expect rants about ableism, information & posts about general Spoonie life. FIBROMYALGIA, M.E, ARTHIRITS, COMPLEX REGIONAL PAIN SYNDROME, ANXIETY AND DEPRESSION SURVIVOR. {?}

[sinnerlikedamon]

Hi guys! I know I’ve not been active recently, and I’m sorry for that, but I’ve had a lot going on and more recently been busy with some exciting stuff! A lot of my followers will know I have multipe, crippling and disabling chronic illnesses,and raising awareness is one of my huge passions. On a whim, I contacted my local newspaper, and guess what? They wanted to do an article on my illnesses, invisible illnesses in general, and how it impacts our family (hence why the picture is of us all.) I was really pleased with the write up and thought ‘great, even if just a few local people read it, they’ll be educated.’ What I didn’t expect was for it to go mental on Facebook! The article has been shared many times, I’ve received messages from other sufferers, I’ve been asked to help a fundraising fun day and even write an article for a magazine - and that’s just within 24 hours of it being posted.

So I think I really have the opportunity to make a difference with this! Sharing it like mad now. I’d really appreciate if you guys read it, and if you’d like to reblog that’d be amzaing. Help me raise awarness for the may Spoonies (chronically ill people) who have no voice!

ARTICLE HERE

[diaryofaspoonie]

so when I was off college and physical health/depression was really bad, I gained quite a lot of weight. I wasn't what you'd call 'fat', but I was starting to not fit into my size 12 (UK) jeans. something needed to happen before it got out of control. I've been trying to lose some since starting college. obviously all I can do is walking in the way of exercise, but it does burn a lot of calories when walking on crutches. since being at college, I've swapped all my crappy snacks for healthy choices. and I've been walking a lot. the difference is absolutely amazing. First week, I lost 3lbs. Second week, I lost 1lb. and this week, the most active I've had since starting college because it was my first full week of hardcore lessons, I somehow lost 5lbs. I weight 11st 2lbs at first. I now weight 10st 6lbs, after three weeks. my first aim was 10st, and I am still aiming for that. but once I lose the 6lbs, I may go a little further. Depends what my body looks like. I now fit not only into the 12 jeans that were getting tight, but I also fit into jeans that I didn't at all. one pair, I bought before gaining weight, and they didn't fit me. Now they do! I'm honestly so proud because it's not at all easy to lose weight when disabled, as you know. I've still been eating as much as ever, but it's the right things, and I am amazed at the effect!

[diaryofaspoonie]

I dunno if I'm being stupid, but I was googling heat pads for spoonies and saw some of your posts on a website called arfadia. I thought it was your blog but realised it wasn't and you said you're doing a-levels, so I presume you're in the UK and that website is in Japan. Just thought I'd let you know, someone might be stealing your posts :) x

that's really weird, thanks for letting me know! I definitely don't live in Japan xD

[diaryofaspoonie]

okay so I know I haven't been on this blog in waaaaaay too long and I'm sorry for that but my life has been so busy, I've barely kept up with my main blog. but busy in a good way!! so in the summer I went on a summer activity camp. I was independent and did lots of physical things despite being on my crutches, and although it nearly killed me, I DID IT. and that was a four week thing that really changed my life and future. more about that in a bit. I turned 18 in August and had the most amazing birthday and party. being an adult is scary but also fun. and it means doctors are actually listening to me more! and possibly the biggest development: I am now in my third week with no anti depressants and coping fine. this is a huge thing for me. I also just finished my second week of lessons at my new college. going back was always going to be hard, but although it is difficult, I'm loving it! I'm even studying an extra subject now and so far, completely coping. I've made lots of friends, focus on me instead of my illness, and I've had no nasty comments or anything. this is a first. it's an extremely supportive college and I'm also going up for Equality and Diversity officer in the student union, to promote equality and understanding. Now, back to the thing over summer and the reason it's changed my future. I'm now looking at going to university! I really think with the right support, I can do this. as a test, my parents have gone away for this week and left me at home, cooking and caring for myself while going to college too. so far, again I am coping and enjoying the independence. they come back on Sunday. so I really think I can have my dream of going to uni. my symptoms haven't improved,and this wet weather is playing havoc with my joints and everything which sucks, but the thing is, I AM COPING. and right now, everything is great.

[diaryofaspoonie]

sorry for not being here much Spoonies, but I've been so busy on this course! the first two weeks were camping and doing lots of active stuff. the second I've lived at home but gone to the college each day. we've been fundraising for charity all week and today is our last day! I'm asking for lots of positive thoughts and spoons today. we're playing uno (it's a card game for anyone who doesn't know) for 7 hours, non stop, in silence. The only time we can leave the table is for a five minute toilet break every two hours or so. This will be challenging, even more so for me, but it's raising so much money for charity so it's definitely worth it! and after today, my course will be over. can't believe the effect it's had. gained confidence as well as friends, got more physically fit as I've walked way more, and done things I never expected. so proud of myself for managing it all!

[diaryofaspoonie]

hi guys, just a quick check in! as you may know, last week I went on a very active adventure camp. I was very doubtful I'd keep up, but they had said I could dip in and out of activities as I wished. well, it went amazing! I did EVERY activity. granted, a lot of it had to be adapted a little and I've suffered, but I did it. I've made amazing friends and I go off for week two, which isn't quite so adventurous but still active, later today after having the weekend to regenerate. rock climbing, cliff jumping, kayaking, abseiling, raft building, bushcraft and archery are just some of the things I managed to do, as well as a LOT of walking on my crutches. yes, I've suffered with worse pain and fatigue throughout the week, and this weekend, but I DID It. I'm super excited to start week two :D

[ifihavethespoons]

i may be smiling/singing/joking/humming/laughing/dancing, but that doesn’t mean i’m not in pain. 

it just means that i won’t let it take away all of my fun.

[actuallyintroverted]

Friendly reminder that chronic illness is not relaxing or enjoyable. When spoonies are lying in bed all day, it is because we are in so much pain we cannot function. 

What Those with Chronic Pain or Illness DO Want to Hear

[jetchickwithmctd]

Truth

[sinnerlikedamon]

Having such an amazing time, and I’ve only been here since 2pm (it’s 11pm now.) As someone who is not only physically disabled but suffers a lot with anxiety/depression, the fact I’ve even decided to go on the trip is a big thing. I knew nobody when I got on the bus, and that alone a few months...

[diaryofaspoonie]

Hi guys! so I'm not going to be here until Friday, probably, unless I can charge my phone, because I'm going on my course starting today. Later today I'm going to get on a mini bus with a bunch of people I don't know to travel to Swanage, and glamping (glamorous camping) for the week, doing adventure activities - well, the ones I can. My instructors are happy for me to just join in or sit out on whatever activities, but I'll probably try most of them. Doing raft building, kayaking and even rock climbing etc. Nervous doesn't cover it, but I'm also so so excited! just hoping I have enough spoons, lol. I'll be back on Friday, and then the following Monday we're off to a different camp site, doing proper camping, and team building. wish me luck!

[diaryofaspoonie]

Weighted blankets are blankets that are quilted with a weighted material in them: polymer pellets, rice, dried, metal washers, etc. Not sure why the annon was suggesting them but they are often used by people with sensory issues or for calming. I made one a few months ago and it helps me relax before going to bed and also recover from sensory overload. They can be expensive to buy but there are many cheap options for making your own, some are even no sew using zip locks bags and duct tape.

ohh okay, thank you! maybe anon was suggesting it because I have anxiety? idk, but thanks for telling me! I had no idea what it was :')

[diaryofaspoonie]

Spoonies + wedged flip flops clearly don't mix... OW!

[diaryofaspoonie]

Have you tried weighted blankets?

no, what are they?

[diaryofaspoonie]

Can anyone suggest some cheap, effective heat pads that can be used on your lower/middle back and are available in the UK? Because this past week or so, I’ve been having worse back pain in the evenings. While at home I can use my wheat bag, but next week I’m going to a camp and probs won’t have a microwave. They need to be affordable, and available in the UK.

Any Spoonies help a girl out?

[stuffandthingies]

try wheat bags! I have 2 and I love them

[diaryofaspoonie]

I said in the original text, I have a wheat bag which I use regularly (I am right now in fact) but I'm going on a trip next week and won't have a microwave. so I'm looking for a temporary alternative :)

[diaryofaspoonie]

So proud. I had my last appointment as a 'child' yesterday, and my last appointment with the M. E specialist I've been with since 2011. As soon as I'm 18, they're no longer allowed to treat me, so I'm seeing the adult team. I already see adult doctors ordinarily, so not much will change, but it'll be weird not seeing Carol every few months. But she told me she was really really proud of how far I'd come and aw I could have cried, she was so lovely. I don't know what we'd have done without her. I was just proud of myself too :')

[diaryofaspoonie]

Can anyone suggest some cheap, effective heat pads that can be used on your lower/middle back and are available in the UK? Because this past week or so, I've been having worse back pain in the evenings. While at home I can use my wheat bag, but next week I'm going to a camp and probs won't have a microwave. They need to be affordable, and available in the UK. Any Spoonies help a girl out?

[diaryofaspoonie]

hi guys! Not been here much so I figured I should give you an update of how I am doing. A few weeks ago, my GP 'supposedly' referred me to a neurologist as they suspect I have FND. I've been pushing for this for ages, so I'm glad it's done. However, the letter that turned up wasn't for neuro, it was a general doctor. And even worse? it was for a paediatrician. I'm 18 in a few weeks so there literally wouldn't be time to fit my in before then anyway, and a woman I spoke to on the phone said I'm seen legally as an adult medically speaking age 16+ as long as I'm mentally competent. I see an adult rheumatologist and everything so I shouldn't have been referred. Apparently, paeds aren't allowed to accept new patients over the age of 18. Which is great, because I want to be treated like an adult, hence why I left my horrible paeds doctor in the first place. The only young person specialist I see is my M. E OT, which I'll get to later. He's putting the correct referral through ASAP apparently, so let's hope he gets it right this time and I can get an appointment booked! Second thing is, I had my last ever appointment with my M.E specialist today. She's helped me since 2011 now and I'm not sure we'd have gotten this far without her! felt weird going out without booking an appointment for three months time. She said she's very proud of me and that I'm managing brilliantly and wants to keep in touch. I'd have stayed in her service longer if I could, but you're out the second you're 18. She's referred me to the adult M.E specialists, who are kinda there as a safety net for if I need them. But my energy levels are pretty equal as she says, and although it's still there, it's under control. I am also super excited because next week I'm going on a four week summer course, government funded. The first week is glamping (glamorous camping) in these teepee type things, and lots of adventure activities like kayaking and rock climbing etc. I didn't expect them to let me go, but they've said I can just do as much or as little as I can! We come home for the weekend and then week two is proper camping and team building stuff. Then the next two weeks we live at home as we plan and carry out a volunteer project. I don't know anybody and this will be a huge test for me and drain on my body, physically and mentally, but I think it will give me some confidence.