I can’t believe how long it has been since I did an actual post about what’s been happening in my life so I thought I would cover my whole summer, month by month, so I don’t leave anything out.
Following my complaint to the RD&E Hospital about their poor treatment of me I received a written apology from the Chief Executive for the way in which the hospital handled my care! She promised that they would learn from this and that it would help to make sure that this didn’t happen again. It was also about this time that I went for the second attempt of the lumbar puncture there and wow!, what can I say, the treatment I received was first rate and much more ASD-friendly. 😊 I had a private room in Gynaecology – this was their idea because it’s quieter than the other wards, has private rooms and more natural light so I wouldn’t have so many sensory issues. The staff were very friendly and I felt okay with the whole thing. I laid still and happy whilst they tried for about an hour to withdraw some fluid but annoyingly they were unsuccessful, so I left with 12 needle marks in my back and no further forward. 😕 Frustrating yes but not traumatic this time because they treated me correctly. No one barked orders at me, the private room gave me privacy, we had the window open and the staff were much nicer. I hope that they have all leant from this and it wasn’t just a case of “let’s improve just for Julia”. They did tell me that they were making sure all staff understand ASD basics so let’s hope. 😊
We went to Bromley to celebrate Paul’s Grandpa’s 90th birthday and I made the cake (see photo below) I had quite a bit of online help from one of the PDA mums, who I won’t embarrass by naming, but I couldn’t have done it without her help. 😊 I won’t lie, the party itself was quite stressful from a sensory point of view – busy restaurant, loud music and lots of people talking and shouting – but I still had a good time and it was nice to have all of Paul’s family together in the one place – this normally only happens at Christmas so it was nice. 😊
Towards the end of May something awful happened – my step dad, Laurie, fell from our shed roof and severely injured his head. Thankfully I was around when he fell and remembered my basic first aid training from school. I spoke to him, kept him talking, kept him calm and still whilst we waited for the ambulance to arrive. It was horrific. Blood everywhere. Something that I never want to go through again. I think I was quite shocked after and you guessed it I went into a bit of shutdown after. 😕 I guess that’s not surprising really. Laurie spent 4 days in hospital. The only injury found was a broken collarbone. At the time we were all so relieved as of course it could have been much worse but more to follow on that in a bit. 😞
Grandpa’s birthday cake
At the start of June Paul and I went to stay with Jane in Stoke-on-Trent for near enough a week. Jane, her hubby, myself and Paul all went to Cosford Airshow and had a proper grown-up day out. Don’t get me wrong I think Mollie is great but it was nice to see Jane and hubby relax and let their hair down. We also met up as usual with other members of the PDA army. We had a lovely time which is why this next bit is so painful – Jane and I are no longer friends (as of end of July) 😞 I don’t want to go into the ins and outs of what’s happened between us because it’s too painful but it’s safe to say that our friendship is over and this breaks my heart.
The 14th June was Paul’s birthday. 😊 I made him a cake (see below) and generally spoilt him rotten! 😃 I really do love him and everyday I am grateful for the gift that is him. 💜
My lovely Jodie came to stay for 3 weeks. It was lovely having her home and seeing how much she’s matured. She really is blossoming into a confident and independent women. I’m so proud of her and all that she’s achieved. 💜
Whilst Jodie was here I had the mammoth task of creating a slideshow presentation to show what I might discuss at the PDA Conference, if I were to take part. You see I had emailed and told them that speaking at conferences is something that I’m desperate to do so they asked if I could put together a slideshow. I had a lot of help from Jane and I couldn’t have done it without her. I worked on it solidly for 3 days! 😳 It is surprisingly difficult to squeeze 31 years into 57 bullet points/19 slides. 😳
I also set up a Go Fund Me account so that I can raise money to design and buy some PDA awareness wristbands. I reached my total within 40 minutes! 😀 So pleased. You can still donate via the above link. 😜
Laurie: is still in a lot of pain, unable to do much for himself and is getting more and more confused.
Paul’s birthday cake
Sometimes I just don’t know what to do for the best 😢
In July we celebrated our 10th anniversary! 😍 Sadly Paul had to work away for our actual anniversary, in fact he was away for most of the week too. I didn’t mind. I support him and his work 100%, even if that means that we spend anniversaries apart. I cannot believe that we have been together 10 years! It’s not been an easy journey at times but we have faced each problem and hurdle together and I don’t think that there is much that we cannot overcome together. Paul really is my rock and I love him to the moon and back. 💗
I finally got to see the GP of my choice after waiting over 6 weeks and I was told that I have polycystic ovaries. To be honest I wasn’t that surprised by this diagnosis. I also had an ultrasound. My periods have become so irregular that it’s not funny and the pain is so bad at times. Feels like I’m being punched hard from the inside out. GP told me I needed to lose weight. Yeah, state the bloody obvious mate! I would if I could but it’s so hard. The whole demand to be thin/demand-avoidance is a hurdle I struggle with.
July certainly was the month for airshows. Paul and I went to Yeovilton Air Day with our good friend. It was a great day. Fab weather, great company and amazing displays. What more could I ask for. Like I’ve already said he worked away too at airshows. Busy days. 😊
I became a Godmother to all 4 of my best friend’s children! 😊 I baked a cake for that too (see below) – I’ve been baking a lot of late and throughly enjoying it. 😊 That was a very proud moment in my life – watching her beautiful children being baptised. 😊
Laurie: is still very unwell. Doctors tell us it’s dementia. 😞
Paul and I went to a wedding in London on what felt like one of the hottest days of the year. Despite the heat it was wonderful. The bride looked stunning and everyone was so kind and welcoming. One day I hope that I’m the bride.
Towards the end of July there was a massive bust up in the PDA group, again I’m not going into the ins and outs of who started what but it was at this point that Jane stopped talking to me. To say that I’m upset and deeply hurt by this would be an understatement. I trusted her not to be like so many others. 😢
My Godchildren’s cake
Ever felt like this???
During August I was still dealing with the fall out from everything from the PDA group. A few extremely spiteful people were still sending me nasty PMs – these people, who I didn’t even know, weren’t even involved directly so I have no idea why they felt the need to involve themselves but there you go. I didn’t reply and just blocked them. I will say one positive thing though – I’ve been shown who my real friends are and I can honestly say I’m shocked at who is on that list – some I expected to be there but some I wouldn’t have thought of in a million years, all these lovely people have rallied round and supported me. Thank you. 💜
I made massive strides with the book. 😊
I also had yet another ultrasound – this time on my stomach, gall bladder, pancreas and liver. All normal apart from fatty deposits on my liver – GP told me not enough to worry about and that it’s normal for someone who is overweight.
My brother and his girlfriend came to stay for 5 days which was lovely. We hadn’t seen them for ages so it was nice just catching up.
On August bank holiday Paul and I took Corey and his mum Go-Karting. Well Paul and Corey did the karting and Lou and I watched! It was great to see Corey relax a bit and enjoy himself. He’s such a lonely soul. It breaks my heart that he’s just being continually failed by services that are meant to protect and help him. 😢
Paul and I went to Shoreham Airshow. ✈️
Laurie became increasingly unwell and following weeks and weeks of traipsing backwards and forwards to the GP and hospital it was discovered that he had in fact broken 4 ribs when he fell! To say that we were stunned that they didn’t pick this up when he was first seen back in May is an understatement! How much pain could he have been spared if he’d known? He was told that the pain in his chest was muscular and that he must keep moving, which he did, and of course that has now made matters worse. 😞 I’m also now using a stick to walk any distance as my balance has become much worse.
I went to see my neurologist and if I’m honest I wonder why I bothered. He’s completely out of ideas and it was clear to me that he can’t help me. I’ve decided that I won’t get any answers. It’s been nearly a year now. A year of pain. A year of waking up and feeling like my brain is trying to force its way out of my ear. Enough is enough. Enough prodding and poking. Enough tests. I will just learn to manage, same as I always have. Whatever happens I won’t let this stop me. I will be okay. I will overcome this hurdle.
My poor stepdad took a turn for the worst and was taken to North Devon District Hospital, where they identified a bleed on his brain, and transferred him to Derriford Hospital in Plymouth. He underwent surgery and there were complications but he’s now making good, but slow, progress. Thankfully they’ve now transferred him to Bideford Cottage Hospital, about 20 minutes from us rather than the 2+ hours drive each way to Derriford, so we can see him more often. Thank you to everyone for their well-wishes. 💜
Paul and I attended a meeting to discuss my involvement at the forthcoming PDA conference in Cardiff and it’s happening! On 4th November I will be speaking about my experiences and hopefully helping others to better understand PDA. To book and for more information on the PDA conference click HERE
I won’t lie to you all I was extremely nervous before the meeting but I’m glad I pushed myself to go. Yes it raised my anxieties and yes I felt intimidated but look what I’ve achieved – more people will hear my story and more support can be given. 😊 I just need to get through the conference now…. 😊
Buy your PDA awareness wristband HERE and help us to raise the public profile of PDA, whilst raising money.
The carrot cake I made for the PDA conference meeting
Paul, sums up my summer 💜
So on reflection: yes I’ve been dealt some pretty shitty blows but I’m still standing and I’m still smiling. I’ve come to realise that some people will never be able to see past my PDA. To some I’m the scapegoat for their anger towards PDA. To some I am just ‘the adult with PDA’. I’ve realised that I need to be more careful of who I let in. I’m tired of being hurt by people who pretend to be my friend just so they can learn more about PDA, which there is no need for because I’m already an open book. If you want to know something then please just ask rather than bullshitting me and pretending you care. I’m tired of being used. It hurts. I’m done crying. You won’t win! Life will always throw curveballs but I won’t let it beat me. I have my family and friends so what more do I need. All in all I’ve had a pretty good summer – onwards and upwards, without negative and cruel bullies. Here’s to better health for Laurie, me and all my friends who are fighting their own battles. Here’s to the PDA army. 😜