JoBlog

For a while I’ve been looking for something worthwhile to fill some of my down time with, and I’ve been searching for a UK pen-pal scheme to join, with no success. So, I’ve set up one of my own.

Letters In Kind is a totally free, UK only pen-pal scheme.

I am really hoping that it will help anyone who is looking for friendship or support for whatever reason. I was initially thinking of people who find it difficult to get out and about, are lonely or who have a lot of free time, maybe due to chronic illnesses or for any other reason. But the scheme is open to anyone in the UK who loves writing or receiving letters.

When I’ve been feeling low, receiving a letter or card in the post has given me a real lift, and I’d love to spread that feeling to as many people as possible.

This is a topic I’ve been trying to write about since early 2012, but every attempt I have so far thrown away. I am struggling to find the words to describe my feelings adequately, without sounding like a pompous fool.

As I have already explained, life for me can sometimes be shit. In general, I’m learning to live with my limitations, knowing where my boundaries are and how much I can get away with. I am no longer getting it wrong on a regular basis and suffering the consequences. But I am left feeling somewhat hollow and unfulfilled.

Most people I have spoken to about this have given me a blank look. I have a house, a lovely boyfriend and a job I like. But I’m looking for some kind of meaning, or reason in life.

For that reason, I’ve been looking for some charity work I can do, and I fell in love with the idea of writing to a few people who were in need of friendship. I love writing letters, and I’m a firm believer in a posted letter meaning so much more than an e-mail or Facebook message. But unless you want to write to death row inmates in the USA, those charities do not exist. There are opportunities for foreign pen-pals, or even paid-for services for meeting potential partners, but no free UK schemes for letter writing.

And that leads me to what may be a crazy idea, of setting up a UK pen-pal scheme myself. Open to anyone, especially those in need of friendship or support for whatever reason, free, and with provision for security.

I don’t know if it’s a great idea, or whether the reason nothing like it exists is because there’s no demand for it. So, if you think it is a good idea, or if you would be interested in being involved in something of that nature, please let me know. You can leave a comment, contact me on Twitter or via Facebook.

I was quite nervous about writing my last post. I worried that I would be seen to be moaning about my situation, asking for sympathy and expecting people to feel sorry for me. And that doesn’t feel right.

I’ve had a lot of messages of support, which I appreciate hugely, but I’ve been very confused by a common theme – almost everyone congratulated me on a very brave post.

I don’t feel brave in the slightest. It feels to me that if I were brave, I would be strong enough to just get on with my life, I wouldn’t be struggling like I am. Choosing to tell the world feels like the cowardly option, not a brave one.

You hear about those people who have been dealt a truly awful lot in life – children with incurable cancer, people living with MS or motor neurone disease – who remain positive and happy, and do wonderful things for other people. I feel I should be like them, and I’m really really not. I’m just not.

Instead, I feel sorry for myself, for the hand I’ve been dealt, and can only seem to focus on the things I’ve lost or that I will miss out on. I’m sure it’s partly the legacy of having had depression for more than a decade, and I do use CBT techniques which help somewhat, but it’s not a magic bullet that fixes everything.

I feel I should be able to just decide to be positive and get on with things. To decide there’s no point being down about life, and determine to be happy and grateful for the many good things I do have. But either it’s not as simple as that, or I simply don’t know how.

Life is tough.

Sometimes, life is shit.

Sometimes, life throws so much shit at you for so long that you start feeling that the deity you don’t believe in has some kind of personal vendetta against you.

Most of the shit that’s been sent my way is invisible, at least to anyone who doesn’t know me well. Which means anyone can say something, however well meaning, and remind me of what I’ve lost, or what I live with every day.

I’ve resisted writing this post for a number of years, because I hate to complain about my situation, or suggest that I have things worse than others – I am fully aware there are a lot of people who go through much worse than this, and cope just fine.
However, I’m not really coping at the moment, and I’m hoping it will help if people better understand what’s going on.

Until I was 15, life was good. Then depression hit. Treatment Resistant Depression, to give it its full title. It took approximately 10 years to find a stable medication combination that stopped me wanting to crawl under a rock and die. In the meantime I’d had a year and a half out of Uni, and failed to complete my degree in the conventional sense (they awarded me what is technically a full degree despite completing less than 1/4 of my final year successfully).

One of the medications I was taking (and still take) is lithium. Normally prescribed to bipolar patients, it’s a mood stabiliser, and for me augments the action of the antidepressant I take, along with other meds. It does however cause one major side effect – my mind is significantly dulled.
It’s not easy to explain to anyone who hasn’t experienced it, as seems to be the way with most conditions I contract… I find learning very much harder than I used to, I struggle to make connections between information, and in general it feels like trying to think through a head full of cotton wool. It put an end to my hopes of a career in Biochemistry, which I’d been pursuing since I was 12.

By the time I was 25, things had started to pick up. We’d just managed to get the medication sorted, I was buying a house and I’d just got a job doing events planning, a first step in a new dream of becoming a wedding planner. Then, in the space of 5 months, a friend from Uni was hit by a bus and killed, my maternal grandmother died of breast cancer, my cat had to be put down, my paternal grandmother died, and my maternal grandfather committed suicide (the last 2 on the same day).
Some time in the next 6 months, while helping my family cope with the deaths and so on, I developed Chronic Fatigue Syndrome – it was gradual. Work have been brilliant at accommodating me, switching me to part-time hours and changing my job description to avoid the tasks I can no longer manage. But it does mean I’m not involved in events planning any longer. I also had to give up organising Cambridge Geek Nights.

CFS is another of these conditions it’s impossible to explain if you haven’t experienced it. The Spoon Theory is a very good start, but to the outside world, I look completely healthy. Apart from the obvious fatigue, CFS has additional symptoms for my already slowed brain. It makes simple things like finding the words I want much more difficult, my memory is significantly impaired, especially trying to hold multiple items in my head at once, and things like learning are extremely tiring. It also causes anxiety problems (on top of the ones I already have from the depression), and renders me entirely unable to cope with stress.

My mind is severely hobbled from various sources, and I remember exactly how it used to be, which makes it so much worse. If I had a physical disability and was in a wheelchair, for example, people would understand – about what’s been lost.

I have had 2 career dreams destroyed, and outside of work my activities, especially physically but also mentally, are severely limited. But because I look normal, people have no way of knowing what’s happening. And that is so tough. Because the things people do or say with the best of intentions can often be the most painful. So please:

If I decline an invite to socialise because I won’t have the energy, please don’t try to persuade me to change my mind – it’s incredibly difficult turning down things I want to do because my energy won’t stretch to them.

If I can’t find my words, or my memory fails me, please don’t make jokes about dementia etc. – I know it’s meant in fun, but I find it impossible to take it that way.

If I’m learning a new skill, try to understand that learning takes me a huge amount of effort, and that I don’t have much capacity left after work and day-to-day living.

Life is tough. I hope explaining this to you will make life a little easier.

My boyfriend is a massive geek, and I organise Cambridge Geek Nights, so when I saw the Codeyear idea from Codecademy, it looked ideal. They offer the chance to learn to code over the course of a year, with lessons e-mailed to you each week to complete online.
Now, I have a bit of a reputation for being able to break programs, finding bugs in games and so on, but I did not expect to come up against a problem in lesson 3 of week 1! The lesson deals with the declaration and setting of variables, firstly showing you the syntax for declaring a variable (var myName;) and then setting it (myName="Jo"). It then asks you to

Try creating a new variable called myFullName with your first and last names.

Typing var myFullName; results in the hugely helpful error message, “Oops, try again”. After some head scratching and some input from David, we found it wanted the response var myFullName = "Jo Anslow";. The fact that you could combine the variable creation and setting into a single line did not occur to me – in fact it is covered in the next lesson, but they require you to apply it before they introduce it.

I think that Codecademy are probably losing quite a few people at this early stage who would give up thinking they couldn’t understand even the simplest lessons – if I didn’t have David in the house, I would probably have quit myself. I shall persevere for the moment, but I’m concerned about what else I’ll find as I continue.

I haven’t been writing on this blog much since we found a medication combination which keeps my depression mostly under control. I’ve now been basically stable for over 3 years on a cocktail of Lithium, Lamotrigine and Buproprion.
It’s quite astounding that the drugs have worked for this long – before this, the longest that one set worked well for was about 3 months. What makes it even more surprising is that in the 6 months from the end of September 2009 to early March 2010, I lost 3 grandparents (one cancer, one old age and one suicide), a uni friend who went under a bus, and my pet cat.
Having said that, the reason I’m back posting again is due to another health problem – maybe related, but probably not.

I had been taking the combined oral contraceptive pill for many years to control heavy and painful periods, and was happy with it. Then the NHS issued a directive that people who suffer migraines with visual disturbances (flashing lights etc) mustn’t take it any longer due to an increased risk of stroke, and I was forced to come off it. I started taking Cerazette (a progesterone only mini-pill). On the one hand it was wonderful. I had no periods at all which was brilliant! But it made me exhausted all the time, and my sex drive was basically nil.
The GP recommended I try the Implanon implant instead – it’s the same drug as Cerazette, but in a lower dose. I tried that for a few months, but the exhaustion and libido didn’t improve, so I had it removed and since 8th March I haven’t been taking any hormone therapies.
The idea was to allow my system to have a couple of normal cycles to see whether the period pain was still a problem. It turns out that it isn’t, but we’ve uncovered a much bigger issue. Ever since the Implanon has been removed, I have felt ill, to a greater or lesser extent. I have headaches most days, anxiety attacks (especially first thing in the morning), my joints are inflamed, nausea attacks which when they hit mean I can’t manage to eat properly, and I’m still constantly exhausted with even less of a sex drive than before if that’s possible!
In addition to all this, I had 5 days in June when I couldn’t see properly – each eye seemed to be working ok on it’s own, but they couldn’t focus together. That was very scary.

I have had a variety of blood tests. I had 2 progesterone readings come back very low on days 21 and 20 of two successive cycles (levels of 2.3 and 2.0 which should be 30 – 80), which suggests a problem with ovulation. But the specialist is not convinced that the readings have been taken on the right days, as I have a longer cycle than 28 days. She is also confused that I still have a regular cycle if I’m not ovulating.
Yesterday I had Estrogen, FSH, LH, Prolactin and Testosterone tests taken, and I’ve got 2 more progesterone levels booked for days 21 and 28 of this cycle. Maybe once those levels come back, we might make some progress.

As those of you who know me will know, I do quite a lot of crafts, and I go through phases of being addicted to different things. Previously I’ve done cross stitch, knitting and hardanger embroidery, and my most recent passion is for crochet.

I started to learn last August, after spending 2 days sat behind a stall at a craft fair with my friend Inga. I started with snowflakes, and made Christmas tree decorations. And now, I’ve moved onto amigurumi.

Amigurumi, as the name suggests, is a Japanese craze for making small cute dolls, usually crocheted but sometimes knitted. The term is derived from two Japanese words, “ami” meaning crocheted or knitted, and “nuigurumi”, meaning stuffed doll. Not being one for taking these things slowly, I started with possibly not the easiest of choices – an elephant.

The pattern is a free download from Lion Brand yarn. The pattern is freely available, but you do need to register with the Lion Brand site. It’s well worth doing, as they have lots of free patterns available.

I made him in white as that’s what I had from making the snow flakes. And I had some trouble with his trunk, but all in all as a first attempt I am pretty happy with him.