A rough week

Sorry for leaving it so long to update and sorry in advance for the length of this :P If you've not yet read my update about the Mika concert last Sun then you can see it here. I've had quite a rough week with my health this week. I think it's just after the concert on Sun but I've never felt this bad for so long after doing something before, so it's frustrating. I've been more exhausted than usual, my headaches have been more frequent and painful, my legs have been heavier than usual and a bit sore too and my tummy pains have been more severe and rather than coming and going like they usually do I had them for about 3 days without a break earlier in the week. Sorry if this is too much information, but The Pill I'm on usually means I don't have periods but for some reason I've had a heavy one this week. So I'm not sure what symptoms are related to that. I'm also still very nocturnal. Luckily I've not had to cancel many plans but I don't think that going out most days this week has helped my health. I've mostly managed to keep my spirits up despite this but did feel very down last night after I was too unwell to make it out to the second meeting of the teenage discussion group in the village. But I soon felt better after speaking to some lovely friends on the Internet and watching a Mika DVD :)

Since mid-week my hands have been really dry and quite sore around my knuckles. I've had this before but I can't work out what causes it. I've wondered if it's triggered by some soaps I'm not used to and this time it seemed to come on after I'd been out and that day I did wash my hands in some public toilets, but I'm not sure.

On Tue I weighed myself as usual and found I'd put on 0.8kg :) Generally I'm finding eating more manageable at the moment but sometimes I still struggle with meals. My dietician was very impressed with my weight, but said to continue with the high calorie puddings for now. I don't really want to put on any more weight though. She wont be able to make the joint clinic next Wed, which is disappointing as she seems to be the one who has listened to me most about my tummy pains and understands how much trouble they're causing me, so I'd hoped that she'd be able to get my consultants to take me seriously. My dietician isn't worried about having to miss the clinic though because my eating and weight is on track. I'm quite nervous about the clinic next week because from past experience I'm not expecting to make any progress with my tummy pains. But we'll see. Mum is taking me to the clinic and dad might be coming too but wont know til Mon whether he can get the day off work or not.

This week I also emailed the psychologist from Hosp B. I saw her last Nov to start CBT in the hope that it would help my ME. She said we'd continue the work via email but would plan more appts too. I emailed her after the last appt in Nov to try to arrange a follow up appt and then again in Dec with some CBT homework she'd asked me to do, but I didn't receive any replies. So I emailed her again this week to see if she's still happy to do CBT with me. If I don't hear by next Wed I'll mention the lack of contact to my consultants.

On Wed I received a phone call from the physio dept at Hosp H, they said that they'd received a referral letter from Hosp A. The lady I spoke to asked me to join a weekly conditioning class?! I explained that I'd been expecting to see a physio one-to-one so she said she'd find out more and phone me back. I feel seeing a physio one-to-one would potentially be more beneficial for me because that way I would be able to explain about having to be careful not to overdo it etc because of having ME. So hopefully I'll hear back from them soon. I have no idea what the referral from Hosp A to Hosp H will have said and whether it will even have mentioned that I have ME! I'll also mention the physio problems at the joint clinic.

On Thur 4th it would have been Codie's 5th birthday if she was still alive. You can read a post I made in her memory here and see a photo here.

Since I was very young I've been a member of an organisation called PINNT which stands for Patients on Intravenous and Naso gastric Nutrition Therapy who support people who have to be fed either parentally (IV) or enterally. They've been a great support to me and my family over the years. We've been to some of their national and local meet-ups in the past and they now regularly hold regional meet-ups at Hosp A. We keep getting letters about them and keep ignoring them because mum and dad don't want to go. But because PINNT have given me so much support over the years I don't just want to abandon them now I'm off feeds (although mum and dad seem to be happy to do that). So I've persuaded my parents that we should attend the next PINNT regional meeting in April just to let them know how well I'm doing and say thanks for their help before leaving PINNT soon.

As I mentioned earlier I probably should have spent this week resting after the Mika concert but that's never going to happen with me! :P So I've actually had quite a busy week. On Mon morning I did some errands with mum. I accompanied her to the library where she cleaned but because our home Internet was down at this point I used the Internet at the library instead. Then I helped mum with a Tesco shop where I bought some liquorish for Alf's birthday and between us we bought a book for Lizzy's birthday to go with the things we'd already bought her. And then we called in at the cinema where we pre-booked tickets for me, mum, dad and Claire to see Alice In Wonderland 3D on Mon. We couldn't do it over the phone because I had my CEA cinema card. That evening I parcelled up Lizzy's presents (a novel, a book about baked beans and a phone sock), helped mum sort out some library stuff on the computer and wrote a letter to my AYME buddy Kate. And that night I had a very funny conversation with dad when I was in the bathroom brushing my teeth and he woke up and got up to use the toilet. He thought he'd been asleep for hours but in fact he'd only fallen asleep 5 or 10mins ago. And he didn't realise he was half asleep so tried to hold a conversation with me, which was very funny! :P

On Tue I didn't do much, but I did wrap Alf and mum's birthday presents and went round to the post office to post off Lizzy's parcel (for her birthday on Thur) and Kate's letter.

On Wed me and mum did my Tac bloods at home in the morning before I took my Tac and then went into town where mum met up with a fellow knitter for drinks. I wandered round the shops but didn't buy anything. I borrowed a DVD called Sunshine Cleaning from the library though which I'm looking forward to watching :) Then on the way back from town we went to Hosp H for the remainder of my blood tests. There was a different phleb there than usual and she didn't know what to do when I presented her with a bloods letter from Hosp B. So she phoned the more experienced phleb to ask her advice, but as soon as she realised it was me she said that she'd come and take my bloods as sometimes other phlebs struggle. My bloods went fine first attempt :) And I was given the number of the lab at the hosp so next time I need bloods doing I have to ring up an hour or two in advance and check with the lab that the more experienced phleb is in. And then I'll go to the lab instead of the outpatient blood test area so she can do my bloods :) On the way home we called in at the surgery to collect some of my tablets and I went to the post office to send off the Tac blood. Hosp B have redesigned the packaging for it making the whole parcel lighter and cheaper to send :)

Wed was Alf's 17th birthday, so that evening after he got back from college Chris and Sophie came round to join us for a birthday meal for Alf. I thought I wouldn't be well enough to participate in it but I was :) He opened his presents before tea and seemed pleased with them. Then we all enjoyed a nice meal - steak for dad, Alf, Chris and Sophie and quorn burgers for me and mum - we're not veggie but just aren't keen on steak which Alf had chosen to have for his birthday. After tea we all chatted for a bit and me and mum were surprised to hear that Sophie is going to become a Samaritan. We were a bit puzzled by that because we can't even hold a conversation with her (she's lovely just not very easy to talk to), so can't imagine her being a Samaritan. But she's passed the interview so will go on a training course this summer. We'll see. Alf went into town that night to meet up with his friends, but rather than staying out all night he came home early because his friends weren't around. So he's gone out tonight instead.

On Thur morning I had to get up at 8.30am (eek!) because I had an orthodontist appt in the city at Hosp A. On the way there I text Lizzy to wish her happy birthday :) My orthodontist was slightly nicer than usual but I suspect that might be because he was aware that they were asking patients to fill in surveys about their experiences. I was very honest in mine, so thank goodness they were anonymous! He didn't give me much time though and gave me some information that was different from what he said last time I saw him so now I have no idea how much longer I'll need braces for. Grrr. He was pleased with my progress though and I've got another appt for 6 weeks time. And he didn't tighten my wires so my mouth isn't sore :) There was someone else in the room though and they weren't introduced to me, so I have no idea who they were!

After my orthodontist appt me and mum went into the city on the bus. At the weekend a friend had given me a code to get some free photo prints from Jessops online, so I decided to use that to get prints of some photos from Florida, Japan and my sixth form May Ball. The code only worked twice which I wasn't expecting, so I ended up using another code that I'd received when I'd signed up with Jessops online and paying some money too. But it worked out well - I think I got 190 photos printed for less than £6 :D You could pay for delivery or have them delivered to a local store for free, so I had mine delivered to Jessops in the city and picked them up on Thur. The Japan photos came out really well but the Florida photos were a bit blurry. And in the city I also helped mum to buy herself a new phone because her 7 year old Nokia 3410 had finally died! She bought the simplest Nokia in the shop but it's a bit different to her 3410 so I've been teaching her how to use it :) Then we had drinks in a cafe before heading home.

Yesterday morn I spoke to Lizzy on the phone which cheered me up. Her and M are going to come round for the day to see us at the end of April if not before :) And I gave her Alf's email address so she can send him an Amazon voucher for his birthday. Yesterday mum ordered herself some birthday presents online - I don't think that's usually the idea! Her reasoning was that she doesn't expect many birthday presents from others, so she's buying herself some instead! :P She bought herself a new phone on Thur and then some DVDs online yesterday.

And I've not been out of the house today. Dad made me laugh this evening though with a display of his non-existent acrobatic skills. Very silly, but funny. And for tea tonight we had a nice family meal (minus Alf who has gone out to meet his friends) for mum's birthday tomorrow. Tomorrow evening dad is taking her out for a meal in the city. He's a bit rubbish at getting organised though, he was very chuffed at himself for getting some money off vouchers for the meal but we just all had a panic when he appeared to have lost them. Luckily they turned up though. And he hadn't thought to book a table but we persuaded him to phone up tonight to check that there will be a table for them and there will be.

The Internet has been playing up recently. We've had a few very small power cuts that only last a second or two, but sometimes they stop the wireless router working for a little while. But on Mon I really couldn't get it working again. It did after a few hours though. And the Internet connection tends to go very slow and sometimes disconnects itself at night when I try to use it.

I thought that the Royal Mail had lost one of the Tesco rental DVDs that I'd posted back as they usually get there within a couple of days. This one got there eventually though but it took a week!

I heard that a BBC website called Blast that I used to use the message boards of a lot and still use now but less often is going to close down because the BBC have decided to focus on quality rather than quantity. I've made some really good friends on Blast but luckily had already found 2 of them outside of Blast. And one of those friends helped me track down another mutual friend outside of Blast a couple of days ago. So now I'm not too worried about Blast closing because I wont lose my friends from it.

Dad fixed my desk lamp last weekend which I was really grateful for. I thought I'd need a new lamp but apparently you can replace the bulbs and dad just happened to have one the right size :)

At Christmas my uncle (dad's brother) said he'd make my mum a huge pair of knitting needles and she received them last week. Mum doesn't like this photo because she doesn't look very good on it, but I've not had chance to take a better one yet and this does show the size of the needles:
I'm currently considering buying this from eBay to go on my wall next to my bed. I love the quote :)

This evening I received an invitation from my friend Lou to her 30th birthday party this summer. I only know the date so far, the other details are still to be confirmed. But Lou doesn't live too far from me so I think I might try to go if I feel up to it. Lou is lovely but it sounds quite daunting because I've never met her before and probably wont know many if any other people at the party and I'm not always very good at being sociable especially with people I don't know well.

The only game I've played on this week is New Super Mario Bros Wii but I got frustrated at it so didn't go on it for long. And I bought myself a new DS game online called Yoshi's Island DS, so I'm looking forward to that being delivered :)

I've listened to a bit of music this week. I listened to Paloma Faith's album on Spotify but that was mum's choice as I'm not very keen on her voice and her music, Owl City's Ocean Eyes album on Spotify but I soon got bored with that, Ellie Goulding's Lights album yet again and some of an album called This Is The Life by an artist called Amy MacDonald who I'd never heard of before but listened to after some friends suggested that I might like her music. I think it might take a few more listens as the songs don't seem particularly memorable after one listen.

I've also watched the music channels quite a bit too. Avril Lavigne is back with the theme song to Alice In Wonderland which you can see here. I'm not very keen though, seems quite a plain song to me. I was very disappointed by the Black Eyed Peas' new song as I loved their last two (I Gotta Feeling and Meet Me Halfway). And there is far too much Justin Bieber on the music channels for my liking, I really don't get why he's so popular! I was interested to see Diana Vickers' new video for her debut single Once, but was a bit disappointed because I really thought the video would be quirkier. The song is growing on me though and gets stuck in my head with each listen :P

On Mon I was happy to see that Starry Eyed by Ellie Goulding had charted at number 4 in the official singles chart and that The Family Jewels by Marina and the Diamonds had charted at number 5 in the official album chart :) And this week Ellie Goulding's album Lights has been selling well on iTunes so hopefully it'll chart well tomorrow.

The only DVD I've watched this week is Pirates of the Caribbean: The Curse of the Black Pearl which I watched with my mum this evening. I'd watched it a long time ago but didn't remember it. I enjoyed it but it was a bit on the long side :P

I've watched lots of TV (live, on Internet catch-up services and on the HDR) this week due to not feeling very well. I skimmed through the Shockwaves NME Awards where Little Boots looked quite different presenting an award, Marina and the Diamonds performed with Biffy Clyro and Lily Allen performed with the Big Pink. I also watched some of the winter olympics where I saw a liver transplant recipient competing, a very good BBC drama series called Five Days, an odd BBC documentary called Why Did You Kill My Dad?, a couple more episodes of Tracy Beaker Returns, two more episodes of the very interesting Syrian School, a rubbish programme about Australia border patrol but I was bored, a BBC documentary about real life stories magazines called Secrets for Sale, another episode of Channel 4's One Born Every Minute, the first 2 episodes of a great new ITV series that I'd highly recommend called Married Single Other, an interesting ITV documentary called Seven Days In Traffic that also mentioned organ donation, Film 2010 which contained a great review of Alice In Wonderland, a Channel 4 documentary about real life stories magazines called My Daughter Grew Another Head and Other True Life Stories, Friday Night with Jonathan Ross which contained an interesting interview with Tim Burton and Johnny Depp, part of an episode of The Bubble, a great BBC documentary called Sue Johnston's Shangri La and I half watched an episode of QI XL. And last night I watched an episode of Embarrassing Bodies because Tori said on her blog that her friend would be on it talking about cystic fibrosis.

I follow lots of blogs and most of them are written by people who have been affected by transplants. 22 year old Rachy keeps a blog that I read regularly here. Last week she attended transplant clinic and was told that her time really is running out and she will die unless she receives a lung transplant in time. You can read her blog post about that clinic here. I know I talk about organ donation a lot but if you are reading this and haven't yet signed up to the organ donor register then please do so. Or if you already have please talk to your family and friends about it. It only takes 2 mins and you can save lives. Click here. Thank you.