This week I'm very excited to be able to bring you words directly from Julia, who was diagnosed with PDA when she was much younger. I'm so pleased that she feels able to open up and share her story, and that she is willing to try and explain to us all which ways life is difficult for her. She also blogs, over at Me, Myself and PDA and she'd be delighted if you visit her site to read more of her recent posts.
I was asked by the lovely Steph if I would like to write a guest post for her blog and how could I say no. I decided to keep a sort of diary. For the first day I chose a day where I had nothing planned and for the second day I chose a day when I had prearranged outings planned. I wanted to show the contrast between days when expectations and demands are low and when they are high. I've also recorded how I was feeling at each given time with regards to anxiety, fidgetiness (physically and/or mentally), anger (if any) and how much my heart was racing (if any).
DAY ONE: A "NORMAL" DAY
Background: I suffer with ongoing daily headaches and other neurological issues. This was a typical Saturday in our house.
6.33am - I woke up because the cat was being sick!!! Had to get Paul up because he deals with it.
6.46am - I've just taken my Ritalin. Now sat, under a blanket, watching the Murdoch Mysteries. Paul's gone back to bed but there's no point in me trying - I'm wide awake now. Anxiety: 4. Fidgetiness: 8.
6.49am - I hate waking up alone. It's so lonely. Even the cats have gone back to bed! Anxiety: 5. Fidgetiness: 8.
7.40am - Paul is up. I've just had a cup of tea. Anxiety: 2. Fidgetiness: 3.
9.30am - I've just had scrambled eggs and toast that Paul made for me. Still watching Murdoch Mysteries. I need to try and sleep. I woke up a lot last night and the pain is still quite bad too. Anxiety: 2. Fidgetiness: 1.
11.20am - I'm feeling a lot better now - I just needed that little bit of extra sleep. Paul's nowhere downstairs so I'm guessing he's in the shower. I'm just snuggled on the sofa in my dressing gown. Not sure what Paul's plans are for today, work I would imagine. Anxiety: 2. Fidgetiness: 1.
11.31am - It turns out he was having a nap on the bed. Guess that's what happens when you're woken up at 6.30am by a cat being sick! Anxiety: 1. Fidgetiness: 1.
11.43am - My mum has just come in because she's just had the final bill for my stepdad's 30 days in the care home. Eek, that's not cheap! Anxiety: 2. Fidgetiness: 5.
2.20pm - I've been watching the Murdoch Mysteries all day. So far I've not washed, dressed or moved from the sofa. Paul has just made me soup for lunch. Anxiety: 2. Fidgetiness: 2.
5.15pm - It's been quite an afternoon really. Still part-watching Murdoch Mysteries. Lots of admin to get through. Ive been busy filling out forms on behalf of my stepdad with Paul. #boringbutneedstobedone. Anxiety: 5. Fidgetiness: 7. Heart racing: 4.
5.44pm - Paul has just got back from Tesco. It's turning cold again. I'm currently listening to some music and chilling mentally. Hopefully having a shower in a bit. Still not dressed but then that's nothing new and it's certainly not something that I worry about anymore - life is too short for all of that. Anxiety: 3. Fidgetiness: 3.
6.19pm - I've just listened to "music" by John Miles. I haven't heard that song in ages! Brings back some very happy childhood memories. Anxiety: 2. Fidgetiness: 2
7.06pm - I've been playing "guess that tune" on Spotify with Paul. Lots of tunes added to my playlist now. Still mostly 80s. Paul is now peeling the spuds and I'm doing some admin/replying to pleas for help. Anxiety: 2. Fidgetiness: 4.
9.37pm - I've caught up on admin, had a lovely dinner that Paul cooked and we caught up on Neighbours. I'm now about to have my shower and settle in and watch Celebrity Big Brother. Anxiety: 2. Fidgetiness: 2.
Bed at about 1am
DAY TWO: A BUSY DAY
Background: Today is a rather busy day for me. I don't go out often but when I do it seems to all happen on the same day. Today I'm off to the local ASD support group coffee morning, a council planning meeting - at which I'm speaking to voice my concerns and then straight after we are off to the theatre to see Avenue Q.
7am - I've just woken up. Slept on the sofa again. Took Ritalin. Went back to sleep because of pain.
8am - Just woken up again. I made proper porridge and watched Murdoch Mysteries. Not long until I have to go out. Anxiety: 7. Fidgetiness: 8.
9.37am - I've done all my admin from overnight. Checked stats, emails and Twitter. I'm just about to start getting ready for ASD coffee morning. Looking forward to going. Mum's just been in with an update about my stepdad. I'm really looking forward to tonight - I've been waiting to see this show for months now! Anxiety: 8. Fidgetiness: 9. Heart racing: 7.
10.17am - I arrived at the coffee morning a little late but still okay. Paid for our Longleat coach trip in March. Really looking forward to that. Currently sitting at the big table writing this whilst the others are talking. I wish Paul was here but he's busy working. Anxiety: 9. Fidgetiness: 6. Heart racing: 5.
10.32am - It's been quite a quiet meeting, which I like. Everyone's chatting away. I'm trying to join in but it's not easy. Anxiety: 4. Fidgetiness: 3. Heart racing: 2.
11.05am - Had quite a varied conversation - we've talked about weight loss, knitting, lumbar punctures and MRIs. Anxiety: 4. Fidgetiness: 2.
11.36am - Listened to a talk on the transition from statements etc. Won the raffle - nail polish so very happy. Anxiety: 7. Fidgetiness: 2. Heart racing: 3.
11.45am - They've just announced to the rest of the group that I'm going to be speaking about PDA at the next coffee morning in March. I already knew this of course but my anxiety still shot up! Lol. Anxiety: 9. Fidgetiness: 7. Heart racing: 7.
12.28pm - I'm back home now. Paul picked me up in the car. He was a couple of minutes late (traffic) but I was okay with that. Now sat watching Murdoch Mysteries again. Paul is making us cheese on toast for lunch. I need down-time before tonight. Anxiety: 8. Fidgetiness: 5.
2.56pm - I could scream right now! I've been trying for well over an hour to get some sleep before tonight but my stepdad has been calling up every 15 mins or so! I feel sorry for him but I have my own needs too. I just need this shutdown time before I go out again but it doesn't look like I'm going to get it so I will just have to suck it up and carry on. I just want an hour or so of peace. I need it. This morning stressed me out and I'm going out again later. Anxiety: 9. Fidgetiness: 5. Heart racing: 6. Anger: 7.
3.09pm - Given up on Murdoch Mysteries for now - I can't focus. Listening to music now instead. Just waiting for the next phone call from my stepdad. He's called 4 times so far since 2pm! I wouldn't mind so much if it was going to be a pleasant conversation but because he's so angry at everyone at the moment it will just be a barrage of swearing and shouting. Enough already! I'm too tense to sleep now. Anxiety: 5. Fidgetiness: 4. Heart racing: 7. Anger: 7.
3.24pm - Sodding red tape! Just had an email that makes no sense. Looks like I won't be speaking at the meeting this evening after all now! Anxiety: 7. Fidgetiness: 2. Heart racing: 6. Anger: 6.
4.36pm - Right, looks like I'm still speaking. Bloody hell! Thankfully it was just a silly mixup. I still need to have a shower but I'm waiting for a call and I know the second I step in that shower the phone will ring so I'm holding off for as long as possible. I really do need to chill but I can't. I've done all admin, emails and stats so now I have nothing to help keep me calm. Anxiety: 8. Fidgetiness: 2. Heart racing: 5. Anger: 3.
4.53pm - I'm just sitting here doing some more admin. Just when you think it's all done someone else requests to join or has a question. It's a never ending task but I really do enjoy it. Feeling more relaxed now. Anxiety: 5. Fidgetiness: 2. Heart racing: 3.
5.45pm - Surprise surprise, I've been running round trying to get ready! Some things will never change! Lol. I was just about to start eating dinner when I got that call I'd been waiting for. Nowhere near ready and we have to leave by 6.30pm! At least I've managed to squeeze in my shower! Anxiety: 7. Fidgetiness: 3. Heart racing: 5.
6.21pm - We are just about ready to leave for the planning meeting and theatre. They are aware we have tickets so hopefully I'll get to speak early on. We must leave by 7.20pm. Anxiety: 8. Fidgetiness: 5. Heart racing: 7.
10pm - What a brilliant show that was! So funny and very rude in places! The smoke they used throughout the show was a bit much though and made my eyes water. Guess the "normal folk" don't consider "us" with those sorts of things. I was fairly calm throughout because we had front row seats so I wasn't worried or bothered by loads of people in front of me. When they are behind you it's like they don't exist! At one point during the show some of the cast left the stage and came into the audience. One of the puppets/people got a bit too close for comfort "asking for money". It was really strange. The puppet had really big eyes and he was looking right at me - it made me feel very uncomfortable for some reason! Lol. The planning meeting went well too - I stood up and spoke, no problem. Our car got blocked in because of road works so we had to leave it and walk home. Slightly annoying but it was our fault for ignoring the signs and being super lazy. This was fine because there was hardly anyone around. It was bloody freezing though! Anxiety: 3. Fidgetiness: 2.
11.09pm - Paul's gone to pick up our car as the road reopens at 11pm. I'm in my pyjamas catching up on tonight's admin etc and trying to defrost! Lol. I'm knackered. Watching Murdoch Mysteries (again) in the background. Anxiety: 3. Fidgetiness: 4. Heart racing: 2.
Bed at about 12.30am
As always, please do leave any comments of support below as they are much appreciated.
For more reading, different experiences, please check out previous weeks in this series by clicking below:
Linking up with the lovely Jenny from Let's Talk Mommy for #ShareWithMe.