It really sucks when you do almost nothing and what would be a really inactive day for a normal person but your body ends up hating you with your muscles screaming at you and you know you've overdone it with movement.
I've been out on 2 short trips today, both in my chair, both I had people pushing my chair for me for most of the day... But now I'm lying here on the sofa in so much pain and I'm like FUCKING WHY??? Plus I'm confused cause when I called rheumatology I was told I had an appointment on the 23rd of august but now I have a letter saying I have an appointment like over a month later I think! 😭
So sick of being sick. Sick of pain. Sick of not being able to go out and do the things I want to do.
Just sick of everything at this point.
P.S. I do have feet I just don't like to have them out cause it makes me feel really exposed so my foot is tucked behind the other one in this photo!
Also, anyone else in love with my central perk leggings???
#centralperk #friends #primark #chronicillness #chronicfatiguesyndrome #chronicfatigue #cfs #me #fibromyalgia #fibro #pain #fatigue #lifesabitch #ijustwantmylifeback #chronicillnesssucks #iwantmyhealthback #imissbeinghealthy
So done. Just so fucking done. I'm done with being exhausted and people who supposedly care about me just not caring at all.
When I'm exhausted and in pain and I say I'm tired and I'm told to 'stop complaining'. No. You have no idea how fucking terrible I feel physically and you just don't care at all. Some of my family act understanding... Some of them say we love and support you right up until I can't do something because of physical or mental difficulties... then it's just 'stop complaining' or 'man up' or just sighing and rolling their eyes each other about me.
I was anxious about my overnight away from home cause 1. It's in an area that makes me nervous due to past and 2. Because this side of the family has generally been in the 'we support you until you have symptoms' category.
This side of the family have actually been doing much better recently but someone I didnt expect to be really dismissive was particularly bad with me. She is usually good with me so it took me by surprise ... sort of. Obviously not gonna name and shame but all my family follow me so they will know.
Exhausted and just want to be in bed now.
When my physical problems flare up or just worsen from me being tired and achey from exertion my autistic signs often get worse so i wont be touched or talk properly to people so I'm there in pain and exhausted, unable to deal with physical touch or talk in conversation which just makes them more annoyed with me and obviously I get that it's frustrating to have a person with you who one minute can talk and do whatever and the next minute they can't even be touched but imagine being stuck inside my head, every time I can't talk or be touched I am the one who has to deal with it.
Ugh just really hate everything right now. Not unsafe or anything, just really fucking frustrate with myself and other people.
Sorry just really needed to vent.
#autism #ASD #CFS #ME #autistic #chronicillness #chronicfatiguesyndrome #chronicfatiguesyndrome #sickoflife #spoonie #spooniereality #struggling #mentalhealth #mentalillness #family #killme #lifesucks #sickofthisshit
Look at my beautiful boy! Been spending all my money this week so sorta broke now but at least I have lots of nice things some I have already and some I am waiting for being delivered!
Ollie has a new 'cooling mat' which doesn't really work too well for cooling but its nice and soft...
He has a new 'cooling coat' which works really well keeping him cool and he can wear it under his work harness so people can still see when he is working.
Bought him an #adaptil
collar in an attempt to control his anxiety as there are some areas in town where he's been looking really spooked.
Oh and of course, the most obvious new one, bought him a halti head collar 😊
And for me I got a TENS unit a couple of weeks back and tonight I finally bit the bullet that I've been thinking about for months and finally ordered myself a wheelchair. Not for use 24/7 or anything and tbh I think if i didn't have to cope with the crazy I would probably not get one but when i am struggling I NEED to get outside for a bit to cope but with my body being broken I've not been able to a lot of times and its had really bad impacts on my brain. So the wheelchair is just for those times when I need to be out but pain would make it impossible.
Also had a fall today in my flat that really fucked with my head cause I was just rushing across my flat and one of my knees just went and i slipped, landed on my back, it gave me a headache, basically just really fucked with my head.
Hopefully having a wheelchair will mean my legs arent SO out of energy that they just collapse on me... I hope...
#servicedog #assistancedog #ADiT #SDiT #servicedogintraining #assistancedogintraining #asd #autism #aspie #autismawareness #autismacceptance #workingdog #dog #cute #dogswithjobs #servicedogteam #servicedogs #assistancedogs #animals #disability #autismassistancedog #autismservicedog #olliethecollie #dogsofinstagram #respectthevest #butyoudontlooksick #wheelchair #halti #headcollar
My shoulders are doing something weird in this photo but just look at the beautiful view and of course my beautiful @ollie.autism.assistance.dog
This photo was actually taken without me knowing about it! The only reason I ended up sat there was because my walking buddy wanted to go to the bench up to see the view but it was up a slight mud hill and I was too tired and didn't want to waste any more spoons as I needed them all to get me round the park and back home!
My head is struggling cause when I have even a slight mental hiccup my way to fix it is to go for a walk or something but my body is so fucking tired and sore atm.
My brain has a hiccup that makes me struggle a little, I then am too tired and/or sore to go for a walk and because I am not able to go for a walk my head gets even more broken and it gets bigger and bigger.
It's hard to control the crazy when I can't control my physical body.
This shit is driving me crazy. Which is ironic cause the thing I am fighting is also reffered to by me as 'the crazy'.
Anyway, im waiting on my referral to rheumatology to go through but really the doctors have said it's just for a diagnosis cause apparently they have to be the ones to diagnose me? Anyway, the doctors are pretty sure my appointment with rheumatology will result in my diagnosis with fibromyalgia and ME/CFS.
As sucky as those illnesses are, im looking forward to finally having a diagnosis because it leads to specialised support for what is specifically wrong with my body. And of course as my gp keeps telling me, once I have a diagnosis they can try my on new meds to help me manage the pain etc.
Photo creds to @_j.alexandra_
#pain #fibro #ME #CFS #coping #chronicillness #closetodiagnosis #tired #fatigue #spoons #thespoontheory #mentalhealth #mentalillness #icansurvivethis #holdonpainends #hope #stayingstrong #keepfighting #park #dogwalk #scenic #lake #view
Not to brag or anything guys... but my life is kinda awesome. And yeh... actually.. that was a brag!
I mean I am struggling a lot recently with suspected ME/CFS and fibromyalgia (the GPs are pretty sure its just waiting for a referal to rheumatology cause apparently they have to diagnose me?) So yeh, that sucks but I am trying hard atm to look at all the amazing positives in my life, and you dont have to look hard to find them.
Yes, my health both physical and mental sorta hate me but there are so many things I have to be grateful for.
My family are amazing and supportive, my friends are always there for me, sometimes I struggle to ask for support but if I ever do I know my friends will be there to help me through things, that means my more recent friends and the old ones who I dont talk to much anymore.
My healthcare team. Having mental health problems sucks but what made it 1000000% easier to deal with is having a good support team of professionals. Being on the right medication made a huge difference to my life and I believe was a key part of the reason I now live not in hospital. My community support team in northampton have been amazing! First i had barbara, my cpn from when i was discharged from childrens hospital for the final time right up to a couple of months back when she retired. Now I have John, not a CPN but my new keyworker anyway, never ignores my texts and is always asking how I am, I know thats his job but him unlike a lot of other professionals, it feels like he actually cares. So grateful for the mental health support ive recieved since I moved here.
My physical health sucks too but I am grateful for my GP who listens and although there is no cure, at least they do their best to help me unlike the GP at my last surgery! Also so grateful that I live in a country where we have as good healthcare availible as we do AND that its free! The NHS gets a lot of shit and yeh, it has a lot of flaws but it also has so many good qualities like not leaving those that cant afford it without good healthcare and although some dont really care about their patients, the majority do their jobs because they want to help.
I am grateful for all these people.
Sorry I haven't posted in about 2 weeks.
Ollie and I had an amazing time in Newcastle spending time with Lucy! ❤
Was just so busy enjoying my time with Lucy and resting every second I wasn't with her so I could go spend more time with her!
We went to the metrocentre, down to the beach, had a movie day, lots of fun stuff! The journey was long but totally worth it for the fun times spent with Lucy ❤
Since getting home I've been catching up on sleep and just trying to get my body recovered from a week of much more going out and about than I'm used to! .
Today I've been feeling a little low but despite that I've managed to get myself washed and dressed and took Ollie out for a toilet break ☺
Was planning on tidying my flat today but clearly that didn't happen cause instead I'm just keeping myself safe and cuddling with my puppy.
Hope everyone's okay. Sorry for being offline for a while!
My railcard is here! 🎉🎉🎉
(Obviously I blacked out the ID number)
Found it a bit weird that my new railcard doesn't have a picture on it but i googled it and all the pictures that came up didnt have photos in the picture place either so I guess that just what they do :/
I'm so so so so so super excited to be going up to newcastle soon to see my amazing husband @lucermathison
❤❤❤ We're gonna go to build a bear and get milkshakes and have movie days!
Can't wait to finally see her for the first time in months! (I think I last saw her before Christmas but tbh I'm not sure!)
Ollie and I aren't particularly looking forward to the journey but it's always 100% worth it when it means I get to spend time with my amazing friend Lucy!
AND my trip to Newcastle means I can give Lucy and @megansrecovery_
the presents I made them!
Love you luce! Can't wait to see you xxxxxx
#railcard #disabled #disabledrailcard #disability #train #trains #traintravel #publictransport #nationalrail
Made this patch a couple of days ago... it has since somehow disapeared but I guess that what I get for having a flat as unorganized as I have! Obviously that patch has some issues around it's border and the hole/gap between the bored and the bottom of the material, but if I get bored again soon I'll give it another go and try to make one without the border issues!
Also decided to treat myself and buy a pretty set of knives from wilko! (In the 2nd photo).
Buying that set of knives made me realise just how far I've come in terms of my mental health.
⚠️ Possible trigger warning..??⚠️
So I bought my nice pretty new set of knives without really giving any thought to that a year ago I would never ever ever of been able to buy a set of sharp kitchen knives. I mean obviously I could BUY some before, but seriously I would never of thought that I would be buying sharp kitchen knives with absolutely no intention to self harm with them at all.
This only really occurred to me because I was excitedly thinking about when Lucy will be coming down to stay at my flat and wondered if it would be less stressful for her to have the knives out of site in an attempt not to cause any triggers. I will of course be asking her directly about what she would prefer later (whether she is more comfortable with them hidden or leave them out) but for now at least, they represent my freedom from mental illness. They are bright and colourful and pretty and represent to me the good things in life worth living for, along with my ability to kill myself if I want to, the point Is, I could kill myself with those knives if I wanted to, but also they remind me of the positives and pretty things in the world that make it worth living in.
For years I have been trapped in a web of mental-illness-enduced sadness which seemed unending, but I have finally escaped that horrible world and I am so so grateful to the people who helped me to get through it, especially at the times when I didn't want to. At that time I honestly wanted to die just so the pain would end but I am so glad now that those people kept me alive through those days so I can enjoy now!
Lots of love going out to those people who saved me. ❤
I have Ollie on my feet on the sofa a lot, I had him on my feet earlier today when I got up to go get a drink then couldn't find him for a minute cause he blends in under my black blanket so well and id forgotten he was on the sofa!
I feel how Ollie looks in this photo. (Exhausted and frustrated is how I think he looks!)
Note to self: I've been feeling better these past few days does NOT mean go out without your usual things to help you if you take a turn for the worse.
Been incredibly active today by my recent standards! Taken Ollie to the grass 3 times, been to Primark to grab some shoes and the bank to change my address, this most recent trip out Ollie and I went to aldi to pick up lots of odds and ends I'd realised I needed to get for my new flat I.e. scissors, draining rack etc. Started to be a bit shaky, Ollie alerted a couple of times but I pushed on cause I was thinking "I've felt so much better these past couple of days I must be totally over what was making me feel bad"... then my legs were going and I was feeling just kinda out of it, Ollie alerted again and I sat down that time. Because I'd been blindly convinced that I was totally fixed I hasn't bothered to bring my water, I actually thought about bringing my water when I was sorting my stuff to go out but I actively decided not to bring it!MISTAKE!
Anyway, after a couple of minutes sitting down I recovered enough to go pay for my stuff and get back to my flat. Thanking god as I went that my flat was so close to wilkos! 👼
Upon getting into my flat I went to turn the light on but then there was black spots in my vision and I just lay down right there just inside the door to my flat for about 5-10minutes! If I'd taken 10 steps I could of made it to the sofa but it just wasn't worth it when I was feeling that bad.
Anyway, eventually I got up, got myself a drink and moved to the sofa for a more comfortable rest!
#exhausted #tired #frustrated #beingsicksucks #outofspoons #thespoontheory #dog #cute #puppyeyes #movinghouse #newflat #newhome #newapartment #whoops #brokenbody #pleasesaveme #fatigue
Last night was (hopefully) my last night living with Mum!
In celebration we roasted marshmallows on the fire!
So I didn't post about it cause after all the obstacles we've had getting me a flat I didn't want to have to post again saying it had fallen through!
The care company agreed to hold the flat till Monday (5th) and at about 5:30pm Monday it hit me my physical health had actually been doing really well recently and with me feeling so much better than I was it would be insane to turn down the flat and not give it a Go!
So, of course 5:30, my social worker, the care company and my cpn all didn't pick up their phones cause had gone home! One very stressful night of waiting later, Tuesday morning, got a call from my social worker to say my funding was still available and a call from the care company to say the flat they offered was still free, Tuesday night, last night living at mums, roasted marshmallows on the fire and watched films!
Today mum was working most of the day so I packed while she was at work then she drove me and my things over to my new flat!
Ollie and I are now settled into our new home. The staff so far have all seemed very friendly and the flat is really nice and we've found a patch of grass just a couple of hundred metres from the building to take Ollie for peeing!
Feeling absolutely exhausted now but keep reminding myself that today was actually a lot physically compared to what I've been capable of recently so I hopefully won't be this exhausted and painful after every day!
Looking forward to waking up tomorrow for my first full day in my new flat!
So so so grateful to my mum and Ian for putting up with me for the last few months! (And Kate but in the end I drove her out and she left before me!) 😂
#newflat #newhouse #movinghouse #newhome #flats #apartments #openfire #roastingmarshmallows #fire #flames #tired #fatigue #pain #marshmallow #movienight #lastnight #movingout #howdoyouadult #exhausted #assistancedog #assistancedoglife #servicedoglife
Sorry I haven't updated about why my flat fell through, the other night I spent an hour lying on the kitchen floor in tears cause I was upset about losing my flat and upset about my physical health falling apart and no one knows why and no medical professionals helping... but yesterday was a better day!
Sent this message to Lucy earlier cause I was just feeling really pleased with myself. Here it is:
I just had my first shower in... God only knows how fucking long, feeling so much better mentally for being clean at last! Washed my face, washed my hair, washed my body, shaved my legs, just feel so much better on my skin now and just so relieved my hair is clean and I've got clean clothes on (although I have put clean clothes on multiple times since my last shower, it just doesn't feel as good when you haven't just got your body clean!) I'm half in pjs now, half in comfy clothes that are socially acceptable to wear outside, wondering round the driveway/between the front of the house and the road out by the field? Wearing crocs cause I didn't want to waste my energy and I really wanted to go outside, didn't want to go for a proper walk cause i didnt want to run out of energy somewhere and collapse and have to call mum to come get me in the car so just enjoying the fresh air out here with Ollie wondering next to me! My hip joint and knee and ankle on my right side are all start ing to hurt now so gonna go curl up on the sofa soon probably but I got in a whole 10 minutes of standing and wondering round AFTER taking a shower which usually wipes me out completely so I'm pretty proud of myself! Anyway, just wanterd to let you know right now I'm really happy cause I'm clean and I'm outside getting fresh air!
I wrote a lot more of an update but then the app crashed and deleted it and I have no idea what I wrote so this is all you're getting for now! Sorry if it doesn't make sense!
#sunset #countryside #scenic #spoonie #goodday #tired #exhausted #sleepy #spooniestrong #mentalhealth #physicalhealth #mentalillness #supportedaccomodation #supportedliving #movinghouse #mysteryillness #beingsicksucks #brainfog #sickofbeingsick #sickandtiredofbeingsickandtired #brainfogsucks #crappymemory
My placement has fallen through. Not ready to talk about it yet but will post in more detail when I'm up to it.
For now, diazepam and comfort food.
Heartbroken cause the flat I was gonna have was perfect. Starting the whole process looking for new accommodation again now 😔
Don't even know how to start explaining my thoughts right now.
I'm staying safe though, not gonna let this knock me back to a level where I could get sectioned again.
Not feeling strong at all but hopefully i can at least keep myself above that level of hopelessness.
I had a new struggle that has never been an issue for me the other day, we went to pizza hut for dinner 😍 before we left I had to go pee but of course I had Ollie and someone was in the disabled toilet... I stood and waited... then I was really struggling to stand... then I couldn't anymore and had to sit on the floor... outside the toilets I felt disgusting sitting on the floor outside there, thinking how gross and germy and horrible that floor must be, feeling pathetic for not being able to do something as simple as just stand for a few minutes to wait. I felt so pathetic, the solution to my feeling how gross I did was so simple, so easy but infuriatingly unreachable.
I don't like that I don't have a happy resolution to that story, I wish I did but for now it's just nothing.
The only slight positive I have is that I am keeping my head under control. I'm not letting mental illness take control of my life again. I'm not going to give up, I'm fighting, I'm not letting the crazy take over my brain and I'm still working on fighting whatever is trying to destroy my body, actually, still fighting to find out what the fuck it is that's going on with my body.
On the positive, I can officially move into my flat on Friday this week!
So excited about It! Kinda terrified cause ill be solo for looking after Ollie so even on my body's bad days I'll have to somehow take home out at the very least for toileting but I'm hoping that will provide motivation and I will succeed rather than pressure leading to failure.
Nervous but optimistic.
#supportedaccomodation #supportedliving #newhouse #movinghouse #tired #fatigue #mysteryillness #illness #beingsicksucks #weakness #physicalhealth #sick #sickofbeingsick #exhausted #disabledtoilets #disability #disabled #servicedog #assistancedog #struggling #mentalhealth
MY FUNDING HAS BEEN APPROVED!! MOVING TO MY NEW FLAT NEXT FRIDAY HOPEFULLY!!!!
Sooooo freaking HAPPY!
So happy I finally have confirmation of which placement I'm going to and hopefully only next week I'll be moving in! 😲😀
The place I'm moving to is supported accommodation that has staff there 24/7, I will have a whole flat just for me and Ollie! Of course I'll post photos of the flat once I'm moved in!
and I went to TGIF for dinner tonight to celebrate us both getting flats! (Kate was getting a flat already, it just happens that our move in dates are both end of next week!)
Had a lot of spoons today so used a lot of spoons! So nice to be able to do things and not be exhausted from the tiniest thing!
#supportedaccomodation #supportedliving #flat #housing #accomodation #tired #fatigue #spoonie #fullofspoons #goodday #dinnerout @officialtgifridays @tgifridaysuk
Today was a good day for my physical health, I took Ollie for a 10minute walk this morning, it's not much to a normal person but for me that was really good!
Was still feeling good when I got home so threw the ball for ollie in the garden and picked up his last few days poops!
Once i got back into the house I settled onto the floor to give an incredibly long haired Ollie a hair cut, part way through got a phone call and it was a social worker calling to tell me I got my funding approved!! -Will write more about that on another post later!
Sat in the garden while kate was in the hot tub after that then Kate and I went for a celebratory TGI Friday's dinner out!
So pleased with my body holding it's shit together today!
Pain and fatigue was never really bad enough today to stop me doing anything and that is the first time in a serious while that my day has been so unaffected!
In bed now and aches are starting to kick in but I'm still so happy with how much stuff I did today and even if my body starts to punish me for all I've done today, just need to remember how good today was and be happy about that!
#dog #cute #dogswithjobs #animals #disability #autismassistancedog #autismservicedog #olliethecollie #dogsofinstagram #dogwalk #fluffypuppy #puppyplay
Here are a few cute photos of Ollie from a field trip to Waitrose the other day. When I get tired in Waitrose there is a bench I always sit on so Ollie tucks himself under the bench and watches the world go by!
In general I've been doing pretty good at keeping my spirits up and staying positive despite my current situation with my health... Today even though I hardly moved yesterday, my legs have been feeling really not good and it's incredibly frustrating cos I really just wanna go for a walk.
So yeah, I did kind of explode earlier today and had a good cry. Fortunately I've always got my ollie dog and my mum to help me through it. Ollie gave me lots of cuddles and Mum waited until I was ready to talk, then convinced me to sit outside with her with a big warm coat on and a hot water bottle and a cup of tea that was as close as I could get at that point to going for a walk.
After a cup of tea we decided to attempt to go on a walk with mum and ollie, I made it probably 200m before I ended up sitting down on the pavement, so Mum and Ollie walked me back to the house now they've gone off on a walk so ollie gets some exercise.
The situation with my health was frustrating enough when I knew I was getting tests done and I was hopefully going to find out what was causing it soon enough... But now I don't have a doctor looking for any answers and it just feels sort of hopeless. I know it's not, I know logically that when I move to my new flat I will get a new GP and I will just keep fighting until I get answers or get better, it's just difficult when I'm not getting a new GP until I move to my flat, and it's been 4 months I'm waiting for new placement and I don't know how long it's still gonna be...
But yeh, I'm much more together now than i was when I had my cry earlier.
Just gotta keep positive while I'm waiting and hope I don't have to wait too long.
#illness #nhs #tired #fatigue #pain #socialservices #socialworker #placement #supportedaccomodation #carehome #supportedliving #mysteryillness #spoonie #tired #frustrated #outofspoons #spoonless #makethepainstop #assistancedog #assistancedogintraining #servicedog #servicedogintraining #collie #workingdog #ADiT #SDiT #meltdown #crying
Obviously not perfected yet but pretty pleased with it for a quick first attempt last night!
Today I have DEFINETELY overdone it physically.
This morning felt like a good day- pain and fatigue wise I mean!
Was feeling good this morning so sorted through my room throwing out a bunch of rubbish and separating clothes for a charity shop and clothing banks. Very pleased that I got lots sorted then took a break to walk to the post box & back with mum and Ollie dog, had lunch then had a bit of a break on my bed cause my legs were achey, Ollie had a little nap on my legs which was nice cause he's like a heated, fluffy, weighted blanket! ❤
Anyway, got up the energy to finish sorting through all my clothes, getting close to finishing I noticed my legs were shaking any time I tried standing (which wasn't very much cause I can navigate my bedroom easily enough just by sliding across my bed. I kept going cause i was really pleased with the progress I was making and I was nearly finished sorting through the shelves in my cupboard.
Finished and walked to the sitting room which was my longest walk since lunch and realised just how unsteady and shaky my legs are, now on the sofa with my hip joints aching so much 😒😒😒
Taken paracetamol but not having much effect :(
Fingers crossed the pain will pass or at least decrease soon!
Would naturally be thinking I hope I get answers from my gp soon but of course I am now feeling incredibly alone with no medical professionals even TRYING to help me and find out what the fuck is causing this shit 😭😭😭
Anyway, I'm still staying sane just about. I'm not ready to give up yet.
And of course cause my gp thinks I'm making up the fatigue and pain he just said use paracetamol & ibuprofen so when that isn't enough to stop the pain i can't do anything more to stop it, just have to sit and wait it out and do what I can with heat packs 😭
#fatigue #pain #gp #doctor #medical #mygpsucks #mysteryillness #tired #exhausted #saveme #jointpain #ache #fixmybody #painkillers #painrelief #worstdoctorever #pleasemakeitstop #makethepainstop #makeitstophurting #servicedogpatches #assistancedogpatches #servicedoggear #assistancedoggear #servicewerewolf