Archives For depression

The 10th of October. 

I live on the floor now. 

Nights are the same, coughing until I fall asleep, then in the morning I’m okay until it starts again. Today, I got a blog post written up, but not posted before it was necessary to lie down. 

Rosemary came for lunch and she arrived to find me on the ground, which is always fun to explain. I got up to eat, but the rest of the afternoon has been face down. I watched an episode of How to Get Away with Murder on my phone, and listened to James Arthur speak very eloquently about mental health on Radio 5. 

It is something I have long struggled with, having been diagnosed with depression at fourteen, and it has varied in severity over time. I have been medicated since I was eighteen, which helps for the most part. I still have days under the heavy cloud, sometimes they stretch into weeks, months, but they end. I know they end. And I’m forever going to deal with the demon that is anorexia which really took hold when I got “better” from cancer. I was in treatment for over a year before I decided I wanted to change. You can have all the support in the world but if you’re not ready to stop self-destructing, you won’t. I still deal with its voice, I worry about my body, how I look. But I know that is not who I am. I am the sky.

The 11th of October. 

I am so tired. I had about three hours of sleep because I was just constantly coughing, and I had to get up at seven because I had to be at hospital at nine. 

It was for my lymphoscintigram in nuclear medicine so we could finally find out if my lymphatic system is the problem in my right arm. I got called through about half nine, having alienated everyone in the waiting room with my cough. I had two injections of radioactive dye in the webbed spaces of each hand, then I had a series of x-rays to see how quickly the lymphatic system would dispose of it. Each scan took five minutes in which I had to be completely still, with my arms stretched out in front of me on the bed. I had six in total, twenty minutes after the first, forty minutes after that, an hour after that, and an hour and ten minutes after that. The final one was me standing up with the machine moved to scan my body. We were able to discern that the right side is not functioning properly, because the dye was long gone from my left arm, but had got stuck in the lymph nodes near the elbow on the right. So now I’ll see Andrew again, and we’ll make another new plan. 

We finally got home at two, had lunch, and now I’m on oxygen because I’m so drained, my sats are dipping. 

What is this rib doing? It digs into the floor and it HURTS.

The 12th of July. 

Venoplasty day!

Any day in ambulatory care means getting up before six which is not ideal, but necessary. I was last to arrive in my section, but that didn’t matter because I was third on the list, so there was no rush with my admission. I didn’t expect to go down until about eleven, so I was very surprised when a porter arrived at twenty past ten. The nurses didn’t even know, so I had to quickly go pee and put my gown on. 

Across in angio, I said hi to all the team, and Mr. Singh (who put the PICC in) came to consent me. Then Andrew came and we had a chat about the plan – it was left unspoken that this is our last shot. 

On the table, I was prepped, covered, cleaned. It is a testament to the greatness of the team that I have to be essentially naked in front of the whole room for a while but at no point did I feel undignified or unsafe. My groin was ultrasounded to find the vein, but there seemed to be trouble getting into it because I heard a lot of talk about scarring, then a dilator had to be used to hold it open so the sheath could go in. Then there were issues with the wires – people had to keep getting different ones from the wall. I think it was to do with the length or the stiffness? They were having to get all the way from the groin up to my neck, which is pretty far. They did a couple of runs with the gadolinium to check everything was in the right place, then it was time for fun and sleepy drugs. I got the nice, warm fuzz, then the discomfort of having balloons inflated inside you. I think they did maybe six inflations in total? They used the two biggest balloons available, in one site in the neck vein, one in the SVC and again a little bit further down. Then everything came out, and I had the awkward five minutes where a man leans heavily on my groin to stop the bleeding and there isn’t much to say. 

I went into recovery about twenty past twelve, where I had to stay for half an hour to make sure I was fine before they’d take the PICC out. When it came to that time, the nurses had changed, and the new one hadn’t done it before, so we had to grab a doctor to do it. The nurse watched closely, but there isn’t much to learn – just pull it out, then put some pressure on the hole. Then the nurse was able to ring the ward, where a student nurse said someone would come for me. Forty five minutes later, she rang again, and the staff nurse said she hadn’t passed on the message, and came straight away. I was fine; another nurse had shared her Jelly Babies with me and I only had twenty minutes of lying flat left. 

Back in ambulatory care, I asked Mommy to get the flowers and chocolates from the car because Emelda and Tracey would be gone by the time I’d be able to, so she delivered those and then got me some coffee and a sandwich, which I was only too eager to get into my face. Then we just had two hours to kill, so I was checking the tennis and talking to Mommy about what had happened in angio and what we do now. I have to keep my arm elevated a lot and try to squeeze the fluid down. We’re going to see if the massage people at the chiro do lymphatic drainage, and if that could help me. I’m also considering acupuncture. Anything that will get this swelling to go down. Anything at all. 

By half past four, I’d got myself ready to go, so I was given my discharge letter and we were out of there. I had a ticket to hear Matt Haig talk about his new book, How to Stop Time, at Waterstones at half past six, and I needed some dinner first. I ended up having a cinnamon crêpe and a chocolate milkshake because I am an adult and I can. 

Because of the wheelchair, I had to use the lift to get to that second floor, where the event was, which meant I basically jumped the queue. However, I chose to sit at the front which was good for watching the interview, but then I was at the back of the queue for the signing. However (and I honestly don’t know why this happened), some people near the front said I could go in front of them, so I got out a lot quicker than I might have. I just wanted to tell him how much I loved Reasons to Stay Alive. I’m so excited to read this new one. 

The 13th of July. 

Trying not to get sad. I’m pretty sure the venoplasty isn’t going to have worked. I’ve spent most of my day looking for effective treatments for lymphoedema. 

I had a chiro appointment this morning, which I was very thankful for because a) my neck has been really clunky recently and b) I wanted to ask about the massage/lymphatic drainage thing. Turns out my neck muscles have been recruited to help me breathe so they’ve got all stiff, and Trine’s not sure if they do this but she’ll find out on Monday. 

When we got back, I wrote a long entry about yesterday, watched two rather short Wimbledon semi-finals, and did a lot of internet research. There are the standard treatments of drainage massage and compression garments, but honestly they don’t sound very effective. There is a chance that acupuncture may have a small amount of benefit, but I’d want to know somebody who’d had it, not just pick a random practitioner. Or there are surgical interventions, and frankly I am leaning towards those. I will try anything. I just want my arm back. I want to not feel deformed. 

The 12th of June.

It’s Daddy’s birthday!

He had already gone to work by the time I got up, which was a good thing because I hadn’t written his card yet. We’re going to take him to the Pink Floyd exhibition in London for his present, so I didn’t have to worry about that.

I had a phone call with Anthony Nolan this morning because they need examples of post-transplant care, so I was telling her how excellent mine has been. I know not everyone is so lucky. Then I had a chat with Nationwide because they had frozen my debit account for no apparent reason and hadn’t told me. It turns out that I had used it at a cashpoint or on a website that has left me exposed to fraud so they’ve had to cancel it. Well, that’s fine, but they could have sent me a letter? I’ll get a new card,it’s all fine.

This afternoon, Mommy and I went into town to take back all the kimonos I didn’t need. I also needed to get some facewipes, then we went into Selfridges to get Daddy some token bits – essentially fudge. I also bought myself some espresso chocolate spread so I’m very much looking forward to my toast in the morning.

Once home, I finished crocheting the bear, so he can go in the post this week!

The 13th of June.

I am annoyed and sad. Finally managed to speak to Tracey (the booking coordinator) and she hasn’t even had the paperwork yet. I have haematology clinic tomorrow so we’ll get them to chase Andrew. It’s all well and good for him to say “Yes we need to do another venoplasty” but if he doesn’t send the paperwork for three weeks I’m going to have to wait even longer for this nightmare to be over. It has been six months and it should not be this hard.

My alarm didn’t go off this morning so I didn’t wake up until quarter past ten. Thankfully I didn’t have anything that needed doing, but I still don’t like waking up that late. I got to have my coffee spread on toast for breakfast though, so there was that.

Since talking to Tracey early this afternoon, the heavy cloud has descended. I don’t think it’ll be a long-term storm, but it’s here all the same. I’ve just sat crocheting, listening to podcasts, trying not to think about it. I’m just so tired and it feels like nobody is trying.

The 14th of December. 

I am so sleepy! I think it’s a side effect of the pneumonia jab – last night during Masterchef, I was working really hard to keep my eyes open, and again at Black Sheep today while I was getting my hair washed. Another early night tonight, methinks. 

This morning, after writing up a blog post, we took the kittens back to the vet for their first jabs. We got them all into the carrier without them really realising what was happening. They mewed all the way there, and continued while Bryn took them all out individually. Everybody is fine, and they seemed less upset by the needle in the neck today. 

After lunch, I was at Black Sheep to see James about making my hair white for Christmas. It’s actually come out grey, but I just need to wash it to make it right. That took a good few hours, then we went to Waitrose to pick up a John Lewis order, and the sorting office for a package I missed yesterday. Now I have all of my presents!

I don’t think I will be going to the gym tomorrow – my back, neck and shoulder hurt, and if I’m all sleepy, I don’t want to feel that in the gym. Fuck it, it’s Christmas.

The 15th of December. 

I feel really sad for no reason. Well, I know the reason – depression. It was there when I woke up this morning, and it has not abated. Tomorrow is my wrapping day and I need to find my festive spirit before I start. 

I really have very little to say. I’ve spent the day wanting it to be over, wanting to feel better. Not even the kittens have been able to cheer me up. 

That’s it. I’m not here today.

 

The 11th of July. 

So Theresa May will definitely be Prime Minister. The House of Commons tomorrow is going to be just fascinating. The weather is going to be appalling it seems, which puts the kibosh on what I had planned to wear. Still don’t know and I really need to decide before I go to bed because in the morning I will not have time to be getting dressed a thousand times. 

This morning I did a blog post, getting back into the habit (hahaha), then after lunch, Mommy and I went into Sutton. I needed to buy some boxes to post things in which was tricky because I’d measured the items in inches, then had to convert those into millimetres and remember which was depth and which was width. Basically it was an arse but I got them in the end, hooray. We went to the station to pick up my tickets for tomorrow, but the machine there was broken, so we tried Wylde Green on the way home, where the man in the booth was very obliging. 

Shortly after arriving home, Ian from Anthony Nolan rang to speak to me about my talk on Friday. That sent me into a panic because in my head it was on Thursday, so then I had to check that I’d booked my tickets and assistance for the right day! Thankfully I had, so then we could move on to topic. I ran them through what I’m going to say, and they had some thoughts of things I need to add in. Will do my tweaks, then email them the bullet points!

The 12th of July. 

I have had an utterly smashing day. Had I not been bothered by what felt like a scratch on my eye all day which was incredibly painful and irritating, it would have been pretty much perfect. Well, also better weather would have helped. Less rain would have been ideal. 

It began with Michaela being an absolute darling and coming into Black Sheep early to cut my hair before my trip. I messaged her in the week because I was desperately unhappy with how it was looking, so she shuffled things around and fitted me in because she is wonderful. I want to grow my hair, so I really needed it shaping into a style which can be grown out. The back has been shortened and the fringe cut back in to make the front bits look longer and even out the length. 

Went straight from there to New Street where I arrived surprisingly early, so I picked up a paper (the self-service checkout machine gave me all my change in 5ps, the prick) and went to wait in the assistance office. I got taken to my train and settled in for the journey. I tweeted Euston to let them know I was on my way, but then we arrived early and the train manager was by my door so he sorted the ramp for me. I saw the assistance chap as I was going up the platform, and he explained that he’d been helping a blind lady, which was all fine because of our earliness and the Virgin man being there anyway, so I was not upset with them this time. 

I got in a cab to take me to meet Lauren in Covent Garden and the rain was torrential. Ghastly. He dropped me off as close to Le Pain Quotidien as he could, and when I got inside, it was crazy busy. At first they did not seem keen to let me wait. However, I managed to charm them and five minutes later, I had a table!

I ordered a flat white and an orange juice while I waited for Lauren and considered the menu. She appeared, and we ordered some food. There was much to catch up on, like my x-ray saga and the horror of her masters course, and I complained throughout about my sore eye. I haven’t had pain this bad since I had the eye GvHD and had to live in the dark for a month because all light was intolerable.

We paid up and had about an hour before I needed to get a cab. We wandered around Covent Garden, and ended up in the Charlotte Tilbury store where the staff were very helpful in getting my wheelchair in and out. I bought some lip scrub and they gave me many free samples! Excellent. 

It was time to go, so I looked for a Hailo taxi but there were none, it seemed? And an accessible Uber was going to take twenty minutes to arrive, so I thought I’d just GoogleMaps it in the chair. This was going fine until the rain came down again and I got lost. Very stressful. I thought I’d give Hailo another go, and thank God, one was nearby. He got there quickly and I got in as fast as was humanly possible. He was quite a new cabbie, but he got me to Westminster in one piece. I then had to race 100m down the road in the pissing rain and join a queue of damp people, waiting to go through security.

My bags were x-rayed and I got patted down while in the chair, then I just carried on through! I sidled up to a man in uniform, and he took me the secret wheelchair way to Dining Room A. I met Cassie and Simon from Anthony Nolan and the photographer. We were all bemoaning the weather, then an MP arrived thinking he was late when he was in fact early, so I had a kind of dry run talking to him, he had a photo, then he had to run off to vote. Will and Amanda, two of the other Young Ambassadors, arrived and we had a chat with the MP for the Isle of Wight who was very nice and asked a lot of questions which was pleasing; I think he had a genuine interest.

The room started to fill up, and I suddenly realised that in front of me was Yaser Martini! I jumped up from my chair for a hug and possibly one of the worst selfies in the world. He introduced me to Seb Casalotti who is the brother of Lara who there was a massive campaign to find a donor for. We were all grieving over the state of the world when we were joined by Georgie Ireland who is one of the daughters from the Give Our Dad A Bone campaign. Their story didn’t have a happy ending, but they found solace in that they made a huge difference for people with his kind of cancer. We talked about hating hearing/watching ourselves, and stealing clothes from our sisters. She was going to get into trouble over the skirt she was wearing when she got home.

I noticed Ben (from Anthony Nolan) and Yaser were discussing how it is desirable to get a slightly imperfect match to get some GvHD. I was just about to share some photos of my skin (nothing too graphic) when speeches began. First to speak was Mark Tami, Labour MP and co-chair of the APPG. His part was only brief, more to introduce Seb, but he did mention that his son had a transplant which I didn’t know. Seb started with a thank you video from his family, then spoke very eloquently about his gratitude, but also his hopes for improving the education about stem cell transplants, especially within schools and colleges, so we get young people wanting to sign up to be donors as early as possible. Then Richard Davidson, one of the directors of Anthony Nolan had his turn, and he thanked everyone for coming, spoke a bit about the report, and introduced me and the other Young Ambassadors for people to come and speak to about our experiences. I was immediately sought out, and from then on was telling the story! I was able to speak to Mark Tami and we discussed opiates and how he is very keen to do more to support mental health post-transplant. I was really happy to hear him say this because mine has been fucked up beyond recognition but it isn’t really even mentioned before you go through it. I had a conversation with a girl from Anthony Nolan who works in communications, and I ended up discussing with her an app I have which shows me where I could get good coffee in London, as she sometimes finds it hard to come by. Now she can have lots!

The event wound down, and we were eventually chucked out by someone in uniform who had to tidy up. A man was found to escort me back out the stepless way, and he was very fancy, in tails an’ all. Once I had escaped, I Hailo’d a taxi, who accepted, but then called me to say that it was going to take him ages and basically, he didn’t want to come, so he cancelled the job. I went back to where I’d just come from, where there was a policeman. I explained what had happened and asked if he could help. I expected him to maybe call someone who could call a cab as I presumed they would have some kind of service? But actually, he went and stood on the street and waited for one to come along that he could hail. And bless him, he stood out there for about twenty minutes while I waited by his box and tried to see if I could spot anyone I recognised. I saw Stephen Kinnock, but that was all. Finally, I heard the policeman’s whistle and I sped out to get in the cab after thanking him profusely. 

The journey back to Euston took a while but I expected it to so there was no stress, I had aeons. As soon as I got there I went straight to Boots to purchase eye make up remover and cotton wool pads to relieve my agony when I got on the train. I picked up some magazines and Pom Bears, and I was barely in the assistance office before they were telling me what platform I needed to be at. The train was sponsored by the new Independence Day film, so was covered in huge pictures of Jeff Goldblum. Fun!

As soon as I was seated, I cleaned my eyes and frankly I am not sure how much it helped. I just ate my child crisps and was thrilled to be able to block out all the light on the way home. 

The 13th of March. 

I thought sleep and a shower would improve my mood but it hasn’t. I woke up exhausted and gave myself another half hour in bed, trying to forget how my self-worth is tied up in how other people perceive me, still. 

I stayed in my pyjamas all morning, watching Sunday Brunch and trying to articulate how I felt yesterday. It didn’t help. When it had finished and my parents had gone out to take Grandma home from church, I went upstairs to wash my hair and listen to Sia as loud as I could. That felt okay while I was up there, singing I don’t wanna die.

It’s been Liv’s hen party today, and several of the girls I was friends with at school went to celebrate. Don’t get me wrong, I wasn’t expecting to be invited, that all fizzled out a long time ago, but I just wonder if I’d never been ill, or if I at least was fine now, if we’d still be friends. I try not to think about all the things I could do if I just had that ability to walk about as I pleased because it’s too depressing. The life I could have had, the person I might have been, the person I might have been with. What was the point in fighting for so long for a life that can feel so empty?

The 14th of March. 

I feel marginally better today. More sleep, some India.Arie and kitty hugs. I had my breakfast and coffee, then watched This Morning with Monica. As in, she sat on the floor in front of the tv and stared at it. I assume after a while it must have hurt her neck, because she jumped up onto the green chair and watched from there. It’s weird, I’ve had it on all week but it’s like she only really noticed it last night. Funny cat. 

After lunch, it was Marvel time, and today’s episodes are very stressful! I texted Christine a lot, and it was a good thing I was alone in the house because I was doing so much shouting at Fitz and Coulson, anyone around would have been worried about me. 

Back to Monica once the programmes were over, and she sat on my lap and did much loud purring. She just chunters away while I scratch her head. So cosy. Speaking of cosy, my new pyjama bottoms have arrived and they’re so soft, I cannot wait to tuck myself up in them tonight. 

The 11th of March. 

Monica can definitely jump. This morning I saw her leap up onto the high green chair, then the bureau behind it, and this afternoon she came up onto my lap without me having to lift her. Progress!

We had a trip into town this afternoon because Mommy needed to take a load of stuff back to M&S, and I needed some new pyjama bottoms after I discovered last night the ones I’ve been wearing have a fairly large hole in the crotch. Not a good look. I saw some in the Gap Body range online but they had none of it in the shop, then I found some I liked in Topshop but they only had them in a 12 or 16 which is of no use to me. 

I whizzed over to the Topshop in Selfridges, being grateful to the man who held the door open for me because both disabled doors were roped off, but they had no pyjamas at all. I fell in love with some super soft grey Paige jeans, then found out they were £290, so I decided to put them down. I also saw a lovely Easter egg that’s ever so chic, sprayed grey, but it’s £30, and yes it might be very grown up, but you’re still going to eat it and you might as well have bought a Mini Eggs one. 

On yes, and Christine’s got us tickets to go and see Ian McKellen and Patrick Stewart in No Man’s Land for her birthday in October! So excited

The 12th of March. 

I’m writing this on Sunday morning because last night I was too unhappy. To start off with the news that the government want to cut PIP to pay for tax breaks, going along with the news about the £30 a week cut to the WRAG ESA people, it’s a terrible time to be disabled. Plus I wasted my day waiting to hear from someone to confirm that we were going to hang out, but she never did. Couple that with being stood up earlier in the week, I feel like crap. It’s not difficult to start feeling worthless when people treat you like shit all the time, especially when the gremlin of depression is just waiting to spread his arms out across your brain and colour every thought. 

I’ve spent most of my day hiding out in the back room, feeling sad and afraid for my future. PIP has barely been established but they’ve already decided it isn’t working, so people will start being reassessed in January next year. Maybe I’ll be deemed sick enough to keep what I get, maybe not, maybe I’ll have to appeal. The removal of points for aids they “would expect people to have in their homes already” is baffling – what is expected? Does Justin Tomlinson have a stool that allows him to shower, or a frame around his toilet? Does he live in a body he can’t rely on, waiting for the day the germs crawl back up his intestines the wrong way and he’s suddenly back in hospital in more pain than can be described with words? The NHS is being dismantled, contracts up for any private company to bid for who are only accountable to their shareholders, not the people dying in their facilities, and the government have some weird logic that the competition between them offers better service. There’s no such thing as competition when we have no choice about where we go to try to stay alive. I’m not sure it’ll be there when I need it in the future. I shouldn’t be worrying about how I’m going to survive. But we all are. That’s the “one nation” the Conservatives are driving towards. United by fear.