Friday, 20 September 2013

Friday Catch Up

It's been a topsy turvy kind of week. 

On Tuesday, I saw Neurology. To be perfectly honest, it was the biggest cop out of an appointment I have EVER had. The letter from my ankle consultant had been put into my file, stating how I should be referred to the inpatient programme at the Royal National Orthopaedic Hospital, in Stanmore. Neurology man saw this, and basically refused to discuss my back any further, as they would help me there. So I am left with no sensation of needing to pee, and other things, but that is okay. It will come back eventually. Whaaaat. He also totally brushed off the information about the Tarlov Cyst that I know I have in my spinal cord, from a previous report. The symptoms of this cyst are the EXACT problems I am having. It felt like I was hitting my head against a bloody great brick wall. 

I left there incredibly distressed. My last post explained why I hated September 17th anyway, and I had a bit of a breakdown. We had some time to kill before we went to see my Nanny, and we needed to get the flowers, so Mum and I headed to Tesco. I was crying too hard to tell my Dad what had happened, so Mum did it for me. I got myself calmed down, and we headed upstairs. Straight to clothing, obviously :P. Mum decided she wanted to cheer me up, and I came away with a lovely owl scarf, a lovely cupcake scarf, and a gorgeous starry skater dress. It's a stretchy material, and I always avoid those usually, because I am a very odd shape. I tried it on though, and it fitted really nicely, so it came home with me. I love it! After that, we sat in Costa. I had a chocolate orange hot chocolate, and it was divine. As I sat there, I started getting my thoughts together, and I realised that maybe, them palming me off to Stanmore would be a very good thing - they are a very specialist team with a very good background in Ehlers-Danlos, and spinal problems. 

Wednesday morning was the turn of the GP. He gave me my choose and book paperwork for Stanmore, and we had a long chat. I am having some awful gastric problems. I won't go into too much detail on that heh, but lets just say it isn't pretty. He put it down to my meds. I understand they don't want me on these meds long term, but I wouldn't be taking them unless I absolutely had to. The decrease in dosage has left me in a lot more pain than before, but I am sticking with it - I now all these drugs aren't good for me. So he's given me some delightful Lactulose to go on with for now. We've also switched the Co-Dydramol for Paracetamol. I will be starting that at the weekend, so will report back with how that goes. With regards to the stupidly low amounts of sleep I'm getting, we didn't really get far - which now I think about it, isn't very useful. He also said I am showing classic signs of depression. Huzzah. 

Wednesday afternoon was organisation time. I had to call the DWP to arrange my migration from SSP onto ESA. I am so sad that I am not ready to go back to work yet. I also found the phone call quite embarrassing- like I was doing something wrong by claiming for it. We shall see how that goes I guess. I also went online to book my Stanmore appointment. They don't have visible appointments, but contact you within two weeks. I put in the additional comments that I was available at short notice for cancellations, so fingers crossed I hear very soon :)

I am trying to focus on the positives from the last few days. If I do manage to get onto the programme at Stanmore, I am hopeful it will be very beneficial. Particularly with my spinal problems, but with everything else as well. It is better to be under specialist care than under the care of someone who doesn't understand my condition at all. 

I thought I'd start finishing my posts with documenting stupid things I've done, or bizarre injuries I've picked up. They are almost always ridiculous, which makes them amusing. Laughter is a good medicine, so I thought I would share them with you. 

Last night, whilst calling Bingo, I managed to smack myself on the chin with the microphone. Proprioception 1 - Shelley 0. 

Monday, 16 September 2013


Is going to be a tough day.

September 17th is probably the worst date of my year. In 2004, on that date, I lost my beautiful and wonderful Nanny.

         I love this picture. Stunning!           This was her 60th Birthday. Woolly Hat and Bus Pass!

Living next door (numerically, but separated by a crossroad) meant I saw her almost everyday. Even if it was just a wave through the window as I walked past on my way home from school. I can't tell you just how much I miss her.

Thankfully, it wasn't long from her diagnosis until she left us. Most of that time, she was sleeping. I remember how the hospital let me come up to see her after my shift at Woolworths, to say my goodbyes. It was way past visiting time, but they didn't mind. She left us two days later.

Cancer is a cruel and vicious disease. It doesn't discriminate. I am not a religious person, so rather than pray, I hope and wish that one day, a cure is found. 

Tomorrow, as well as going to give my Nanny her flowers, I will be at the hospital. I am seeing the Neurologist for the results of my Spinal MRI. I mentioned in an earlier post how I read a copy of the letter sent from the Spinal Diagnostic Team to my GP, requesting my referral to Neurology. I decided to research one of the things noted from my original scans, and was utterly gobsmacked to learn that not only is it common in patients with EDS, it also explains all of the symptoms I have had since I injured my back in February. 

I will do a detailed post on it after I have seen the Neurologist. I am going to take my research with me, as these things can sometimes be overlooked. I am not going to lie, I'm a tad scared. My life has been totally changed since February, and there is a chance I won't get back to where I was. I guess I will have to see what they say, and choose my path from there. I haven't been sleeping at all well for the last two weeks, and I think tonight could be my worst night yet. I distracted myself with a jigsaw earlier, and I painted my nails a little while ago, but I'm all out of distractions now. Gah. 

So yes. Tomorrow is not going to be a happy day. I honestly can't wait for it to be over. Although, the Uberman is coming over tomorrow evening, and we're going to watch some Breaking Bad. We've almost caught up now... it's getting a bit tense! 

Over and out for now...

Monday, 9 September 2013

Autumn Leaves, When The Grass Is Jewelled...

Autumn has officially arrived today.

It's strange, the things you can remember from your childhood, and how you attach them to something. The title of this post is from a song we used to sing at my primary school. As soon as the first leaves fall from the trees, it pops into my head, and it stays there until the last leaf has fallen. 

I must confess, I am sad that Summer is leaving us. I will miss the warmth, the sunshine, the tinkling of the ice cream vans, the sound of ice cubes in drinks, the smell of barbecues, and most of all, the sun shining until late into the evening. 

There are things about Autumn that I do like. The crunch of the leaves is a lovely sound. The oranges and reds as they get ready to drop can be stunning, almost like a blaze. The smell of a barbecue is switched for the smell of bonfire, which I love (but hate the smell of it getting into my hair!). The conkers falling from the trees remind me of a family tradition. On my Auntie Sue's birthday, we used to all go across to the trees opposite her house, standing in the trench between the road and the field, getting as many as we could. Then it was back to the house to get warm, eat pizza and have some cake. Another memory which comes flooding back when Autumn is mentioned. 

I am quite a cold person, so I own lots of lovely warm jumpers and jumper dresses. I love being snuggled up inside, with a hot chocolate, keeping the weather locked firmly outside. Damp does not make my joints happy, so being warm and dry is my priority. My slanket is my best friend in Autumn, and shares that role with my duvet in Winter (I am actually shuddering at the thought of Winter!). I love being cosy, but also being able to do things because my arms are still warm. Whoever invented them is an utter genius.

When the clocks change, a real sense of sadness hits me. I hate that there is so much darkness. That the Sun and Moon switch places so soon. Daylight disappears in what seems like such a small time. I guess I should be grateful that I don't live in a place where they hardly get light at all! I would not be a good eskimo. For me, the darkness feels oppressive, and I am counting down the days until the daylight holds it's own again.  

The main reason I don't like Autumn is it means that Winter Is Coming. However, this year I am going to try to appreciate Autumn's good bits, because they are there. Crackling, burning and blazing away. A post on Winter will follow - but only when it arrives.

Talk to me about Autumn - like, love, dislike or loathe? I fall into a space between like and dislike. I can't honestly decide for definite.

Monday, 2 September 2013

Time To Be Honest

As I promised in my last post, here is an update from the last few weeks of me. I have decided to be totally honest and frank about things.

After being told that my feet were both very damaged due to the majority of my connective tissue in there being effectively useless, I kind of floated along in a little bubble, not reacting at all to what I was told. 

The things which were put into place following my discharge from the surgeons have started happening. I have begun physio with the loveliest lady, who is the first I have seen who completely understands that the EDS affects everywhere. This is almost miraculous at my local hospital! She is going to treat me as a whole person, step by step. We've set a plan in place to get me strong enough to start hydrotherapy, so I have a goal to reach. 

This week, I go to meet the orthotist to be measured and prepped for my Ankle-Foot Orthosis. Should be interesting. Then they'll go away and make it (as I understand it anyway), and in a few weeks time, I go back to get it fitted. It will need a name when it arrives, but I guess I won't know what to call it until I see it. 

Alongside these things, I've been having real problems with my knee and back. The MRI scans really knocked seven bells out of me. You don't really think that something as simple as lying still in a big tube is going to cause problems for over a week. It does for a bendy. Since I hurt my back it has been incredibly painful to lay on whilst I'm straight, so being unable to move for almost 70 minutes left me in complete agony. I was just starting to get over that...

And WHAM. One simple stretch out from being tired and I am in so much pain. I can't think straight. This is taking so much thought and time and effort to type out. I can't get comfortable sitting, I can't get comfortable to sleep... I'm running on empty. Not being able to weight bear on my knee is making movement so very hard. I have zero spoons left after a hop from my bedroom to the sofa. Every single slight movement sends pain screeching through me. A simple cough or sneeze leaves me ready to cry. I am at break point. 

I also spent Saturday morning researching something that was noted on the letter sent to my GP from the Spinal Diagnostic team, and cc'ed to me. I am still utterly gobsmacked. It totally explains every last one of my symptoms, has established links with EDS and connective tissue disorders... but it has been totally ignored by the hospital. I am going armed with as much information as I can to my next neurology appointment, to try and find out why it hasn't been followed up. 

I don't like having to let all of this out, but if I don't, I think I'm going to go crazy. I feel like I'm dragging everyone around me down, which I hate. I know that people are in far worse positions than I am, and I should be grateful for that, but at the moment, I just can't keep the brave face on. Everything just seems so shitty, and I don't really know what I can do to make it better. I feel bad that everyone around me can see I'm struggling, and can see how miserable I am. I can only imagine what it feels like for them to see, which makes me feel so guilty when things are bad like this. I just can't seem to pull myself together. 

If there are any bendy people, or fellow spoonies reading this, who could offer me some advice on how to get smiling again, I would love to hear from you. I am sure there must be light somewhere. I just need to find it.

Sunday, 1 September 2013

The Monthly Round Up - August

Hello Everyone!

This month has flown past so bloody quickly! I saw Keshia's post and was promptly reminded that I needed to get this done. And also get blogging more! I will follow this post with an update on everything. I promise. 

Read: Again I have had another month without any real reading material. I've been reading through blogs, reading reviews, leafing through crochet books, but that's it really. I usually read more in the winter months, so this bullet point should get a bit more interesting soon!

Watched: Breaking Bad. The same as last month I know, but I am totally addicted to it! We're just about to hit Season 5, so all being well we should be up to date before the final episode hits the UK. Jesse and Walter have invaded my life!

Listened: Team Rock Radio. It launched at Download this year, and it's really good. I've grown pretty sick of daytime TV, but Bird loves to see a picture on the TV. TRR is a great solution - music I like plus something to keep him quiet! They play some awesome stuff. 

Most Used Beauty Product: I have been on a using it up splurge, and I'm working my way through a Lush Happy Blooming Jelly. It was a forum special last year, and it was truly lovely. It reminds me of days when I thought Lush were the best thing since sliced bread. Turns out they aren't! Still, the jelly is lovely, leaves my skin soft and smelling yummy.

Ate: The Uberman made a gorgeous cake for our Bank Holiday BBQ. He has a set of pans which turn the filling of the cake into a heart shape, so each time you cut a slice, it has a heart in the middle. It was a red velvet cake with extra thick fresh cream in the middle. Absolutely delicious! 

Drank: Cherry 7Up. Beautiful stuff :)

Did: I finished the blanket! Wooohooo! 

Went: I went to DASH last week, a service for disabled people in my local borough, to get help filling in my Personal Independence Payment form. It has been posted now, so fingers crossed it goes okay.

Favourite New Thing: My new bed. Being stuck downstairs has meant a single bed, and my Uberman staying on a fold out bed. A couple of weeks ago, we ordered a new bed, which comes with a guest bed that comes up to the same level as the main bed. It folds down and rolls underneath too, taking up far less space. Means snuggle time again, yay :)

Favourite Photo:

Finished Blanket! Woooop!