Sunday, 5 June 2016

Sunday Snippets - 5th June 2016

You may have noticed I didn’t post a Sunday Snippets last week. Unfortunately I hadn’t had a very good week, as I was quite unwell (more of that in a minute), so I decided to just take some time away from my blog to focus on getting myself feeling a bit better again without having to worry that I hadn’t posted. Thankfully things improved a bit, and although I’m still not feeling great, I can at least get back to doing what I love; blogging and YouTube. It’s amazing how much I miss it when I’m not able to do it, and even when I am able to blog or film, I feel desperate to be able to upload more content. I have so many ideas in my head for blog posts and videos, I just wish my body would play ball and let me achieve my plans! I try not to give myself a hard time about it, but it’s hard. Anyway, I thought as I’d missed last week’s update I would do a double update this week. I will try my best not to make it too long, but you know me, I’m terrible for rambling (hence the blog name!)

The Sunday before last I woke up fairly late feeling not so great, but managed to get myself up and dressed eventually. I spent the morning writing and uploading a blog post and watching a bit of The Simpsons. In the afternoon I watched a bit of The Smurfs 2 (don’t judge!) on TV and wrote an article about strokes for a local magazine. I then wrote a few birthday cards for June and rested a bit. How cute is this unicorn card?! I was really ill in the evening and there were a lot of tears.

On the Monday I woke up feeling pretty rough again, as I’d had a bad night with feeling quite unwell. I tried to take things slowly throughout the morning but did manage to get a bit of tidying done in my bedroom – when I’m anxious I seem to tidy, although I think I overdid it. I came across this lovely piece of jewellery that a friend gave me for Christmas and with how I was feeling it just felt like a little reminder to hold onto hope. I spent the afternoon trying to get a Fortisip down me, as eating was a struggle and everything just seems to make me more unwell. I had hoped to get some admin and planning done on my laptop, but ended up falling asleep and kept waking up in cold sweats.

Tuesday was pretty hellish to say the least. I woke up feeling pretty awful, went downstairs to have breakfast but was doubled over with the most painful abdominal cramps I’ve ever experienced. After a lot of tears I called the Pain Clinic, but had to leave a message asking for urgent advice. I wasn’t able to keep even fluids inside me and couldn’t walk properly, so my Mum got an urgent phone appointment with my GP. She said I should try and persevere with the Tapentadol (a new pain medication I had recently started, which is what we believed to be causing my symptoms), but if it was getting too bad then I should change back to the Tramadol. I got rapidly worse as the day went on and the abdominal pain, sickness etc. just seemed to be getting worse. So my Dad rang every number we could find to get through to the Pain Clinic and thankfully the third number we tried was answered by a secretary. We knew they didn’t do emergency cover, but it was our last resort before going to A&E, and as silly as it sounds I wasn’t well enough to cope with A&E. Everyone at the Pain Clinic had gone home apart from one consultant, who very kindly rang me at about 5.30pm. After hearing what was happening, he told me to stop taking the Tapentadol immediately because I was having a serious reaction to it and if I continued to take it, it could potentially be fatal. I’m so glad that I had my parents fighting for me. There were a lot more tears that evening – I’ve been really low and scared about my health anyway, and this very nearly tipped me over the edge. But little Freddie looked after me – every time I cried he came and licked my face, and lay by my stomach when the pain was bad.

On Wednesday I woke up still not feeling brilliant, but knew it would take a few days to get the Tapentadol out of my system. I had a phone call from one of the Pain Clinic nurses to check how I was doing and to confirm I could go straight back on my Tramadol. I had a very quiet day, as I was still getting some of the abdominal cramps (though not as bad as the previous day) and was very wiped out. I also had a lot of pain in my kidneys, which needed to be kept an eye on. I did have a call from someone at Mind, as I was helping them with an article for their latest magazine. Apart from that though, I mainly dozed and watched some TV/YouTube videos. I managed to keep a Fortisip and some bland food down, which was good. I also received this lovely card from a friend, which came at just the right time.

Thursday was another fairly quiet day, as I was still feeling very drained. I spent the morning dozing on the sofa and watching some TV. In the afternoon I watched some YouTube videos and caught up on some of my blog e-mails. My friends, Helen and Sam, came over in the evening to sit with me for a bit, which was so lovely of them and I really needed it. Helen gave me this cute card from her daughter, Lexi, which really made me smile.

On Friday I had a phone appointment with my Gastro Professor first thing, which I was quite nervous about but it went OK. He thinks we might be missing something so is having a think, but he believes I’m still having trouble with bacterial overgrowth in my small bowel (SIBO), so will write to my GP about taking strong antibiotics whenever my symptoms flare up. He also thinks some of my pain is coming from trapped nerves in my abdominal wall, so wants me to have injections into my tummy. He asked if I’d heard of Bear Grylls (which I have) and said he was referring me to one of his survival courses, as they’re meant to be good for people with EDS. I had him on speakerphone and my Mum and I looked at each other in surprise, but then he started laughing and said he was joking – I love how down to earth he is! He did recommend Bear’s new book though, as he said a really good nutritionist writes it, which may be helpful for me. My Mum then took me over to our local hospital to have an ECG, as the machine at my GP surgery is currently being fixed. I rested at home for a while and watched a bit of Family Guy. My Mum and I then popped to the chemist and Waitrose – I had a small gift card for Waitrose, so decided to treat myself to some pretty tulips.

On the Saturday, my Mum and I went over to Tesco to do a bit of shopping. I picked up a couple of magazines, as I’m trying to find a health and wellbeing magazine to read that isn’t focused on losing weight. I also managed to get the Bear Grylls book that the Professor recommended and one of the new PG Tips teas to add to my collection. After our shopping, we headed next door to Next and met my brother, David, for lunch in Costa, which was nice. David had to go off somewhere after lunch, but my Mum and I had a browse round Next at the clothes, as I still had a voucher from Christmas. When we got home David was there, so my Mum and I helped him do a bit of tidying in his bedroom (well, I supervised!) as he’s gradually trying to clear it now he’s moved out.

Right, onto the week just gone! On Sunday my Mum took me for my second dress fitting for both bridesmaid dresses. On our way home we popped into town, as I’m looking for some new trainers. Unfortunately I didn’t find any – they seemed to have loads for men but hardly any women’s (not that I mind wearing men’s trainers, but I want pretty ones!) so I’m going to look online. I spent the afternoon watching YouTube videos and doing some admin on my laptop. We all went out for a family dinner in the evening to celebrate my sister, Rosiie’s, birthday. When we got home we did her cake and candles (red velvet cupcakes made by my Mum and I) and watched her open her presents.

Monday was a fairly quiet day, which was nice although I felt very low and flat. I spent most of the morning editing a video on my computer, but didn’t quite get it finished. I had a reflexology session, which was just what I needed and so relaxing. In the afternoon I popped to Waitrose with my Mum, just to get out of the house for a few minutes, as we didn’t need much. We then came home and watched The Soap Awards that we had on record. This little chap barely left my side all day, which is cute, although he gradually wiggles and pushes me out of my seat!

Tuesday was another fairly quiet day, which was good, as I wasn’t feeling too good and just seemed to be absolutely exhausted. In the morning I did some more Hen Do planning, and then rested for a while watching YouTube videos with Freddie snuggled up on my lap. My Mum needed to pop to Waitrose, so I tagged along and treated myself to the Good Housekeeping magazine. I think I might be a bit younger than their target audience, but I really enjoy it! When we got home my Mum helped me with some Hen Do preparations, then I settled down with a cup of tea and some rubbish TV. Despite being the last day of May, the weather was actually more like the middle of winter!

On Wednesday I had to be up fairly early for a hospital appointment. My Mum came with me to see my Rheumatologist, who is really lovely. She was concerned that my health has deteriorated since our last appointment, so I had a load of bloods taken to check if there’s anything else going on that we’re not aware of. She thinks the pain injections are a good idea and is going to talk to my Pain Doctor about the possibility of using pain patches to try and control my pain. She’s also going to try referring me for inpatient treatment at Stanmore again; on the off chance they open their waiting list soon. If they don’t, then she said I’d have a copy of the referral, which my GP can resend as soon as they open. I came home and spent some time editing a video and writing a blog post. My Mum bought these beautiful flowers in Waitrose, which made me smile.

On Thursday my Dad and I headed over to Costco to get a few bits and bobs for the Hen Do. We were very tempted by the Krispy Kreme doughnuts, especially as I’m desperate to try the new Nutella one (not that I should be eating them!) but we were good and managed to resist! I came home and rested for a while, as I was feeling absolutely exhausted. My friend, Sarah, was back home for the week, so I went over the road after lunch to see her. We spent the afternoon just chilling out and chatting, which was really lovely. When I came back home I found I had some post, which included my Veronica Dearly box for this month.

I woke up a lot later than I’d planned on Friday morning, and didn’t feel particularly great all day. I don’t know if it’s a bug or something, but my energy levels are really low and I keep feeling sort of fluey. However, I had a list of jobs that needed doing so had to push myself to keep going. I did some bits on my computer in the morning, although ended up curled up with my head in my hands because nothing was working or going right! Alfie was snuggled up next to me, fast asleep, and just looked so cute. After lunch, my Mum and I had to pop to our local florist and we also dropped into Next so my Mum could pick up something she’d ordered. When we came home I did some last minute Hen Do preparation.

Yesterday was Hen Do day! After months of planning it was finally here! The weather wasn’t great, but it didn’t rain and wasn’t too cold, which was the main thing. I went over to Emma’s parents house in the morning to help her sister set everything up, then everyone arrived around midday. It was a Disney themed garden party, so we all wore Minnie Mouse ears and Emma had a special pair with a veil. We spent the afternoon eating, making cocktails and playing various games. It was a lot of fun and despite feeling absolutely shattered I think it went well. Once I’ve edited the photos from my camera I might do a separate post about it in case you’re looking for party ideas, so keep your eyes peeled!

If you haven’t read my blog before, I just wanted to let you know that I have a second blog, which mainly focuses on my health in more depth than I talk about it here. It’s largely for friends and family to follow and keep up with what’s going on, but if it’s something you would be interested in reading as well, you are more than welcome to follow me over there. It’s called ‘Zebra Crossing’ and you can find it by clicking here. I’m trying to keep it updated fairly regularly, so hopefully there will be something there for you to read!

I’m also trying to post on Snapchat a bit more, so if you fancy following me, my username is Jennycole44.

What have you been up to this week? I always enjoy hearing about your news and adventures!

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