Thursday, 29 January 2015

Anxiety

You take away my confidence in myself. You make me believe I can't so fervently that I actually can't. You are a physical being, a monster inside of my head and my chest and my legs. You stop me from breathing and you make my eyes continually leak. You jumble up my mind so that my thoughts come out backwards and upside down and incoherent and you turn me into a blubbery mess. You stop me from going outside. You stop me from opening the front or answering the telephone. You make me want to cut myself and you tell me that I'm useless. You tell me I am weak.

But I am not. 

I am strong.

I am strong because I have fought you for so many years. I am strong because with you on my back my load to bear is so much more than it ever was before and I am still here. I am still going. I am strong because you have made me open up to my friends and my family and the world and I know I don't have to fight this alone. And I CAN fight you.

With every inch of my being I will fight you.

You will not beat me.

Monday, 5 January 2015

The Start of a New Year

I think when I look back at the past year I’ll say it’s the year I really learnt to accept my disability. Finally understanding what is going on has made a massive difference, and I feel like I finally am being taken seriously by the medical community. Although this year has been full of medical annoyances, I think I’ve learnt that I’ll pretty much hate any hospital appointment. Last week I went to see a dermatologist about something completely unrelated to EDS or POTS, and as with all of my appointments about the chronic stuff, it was one of the most impersonal and unfriendly experiences. She didn’t smile, introduce herself or generally have any bedside manner whatsoever. Mr Spoonie Foodie was absolutely dumbfounded by it, but I‘ve learnt such is the way with most specialist consultants and get less angry every time I experience it. I’ve started to accept my limitations, now that’s not to say I’m not going to fight them and try and get better, but it seems I am finally learning to live within my capabilities. Deciding to use the wheelchair will probably go down as one of the biggest things I did to help myself, I thought it would feel like defeat but instead it has been totally and utterly freeing.

2014 will also go down as the first year I decided to not go out for New Years, not through illness, but because I knew it would be the wrong thing for my body. We had plans to go to a night at a local pub with friends, but the more I thought about it the less I wanted to go. I woke up on new years eve and decided I didn’t want to start another year with a week in bed feeling dreadful and emotionally raw. Instead I made an absolute feast for one of our best friends and his girlfriend, and wished them farewell when they went off. I had a glass of prosecco and went to bed. It was fantastic! (It wasn’t so fantastic when I was woken up by a very drunk Mr SF at 5.30 am, but we’ll just brush past that). I’m certainly not saying I’ll never go on a big night out again, but I’ve been feeling so good recently I didn’t want to ruin it on what is just another night out.

So, what do I hope 2015 holds for me? To be honest I don’t know, and I’m ok with that. I’m definitely not one for making resolutions, but I do have some aims. I’m starting the year with the strongest frame of mind I’ve had in a long time. I’m eager to do more, and would love to start regular work again, but I’m also aware of not doing too much and pushing myself backwards again. I want to do some studying, as I mentioned before I’m really interested in nutritional science and there’s loads of other stuff out there to keep my mind occupied. I’ve also decided to give myself a Christmukkah present this year of private Pilates classes. I’ve contacted a recommended instructor and am waiting to hear back and I'd like to post more regularly on the blog, particularly more recipes. But most of all for 2015 I just want to stay feeling ok. I’ve had one of the nicest Christmases that I can remember. It’s been a constant stream of family and friends, which although has made me anxious at times, has just reminded me just how good I have it. I recently got to meet my new nephew, and there’s a strangely nice feeling about the fact that the next generation of the family has been born. Yes, things in my life could be better but I’m feeling pretty content at the moment. I have friends, a beautiful home, a loving partner and a fabulous family, plus I cook really good food! 

Thursday, 4 December 2014

Why?

I recently realised that I have never really explained the ‘why’ behind the blog. Yes, I've told you I love cooking and what my conditions that make me a spoonie are, but I've never explained why I think they belong in a blog together. I think I’m going to try and do that now!

Food and health are inextricably linked. For starters food is how we get energy, not only to have the energy to go out to the shops but also it gives our bodies the building blocks to function right down to a cellular level. I’m not even close to being an expert on nutritional science but it is something I am fascinated in learning more about. So we need to eat in order to survive and not only that but we need to eat the right things in order to function properly.

But that is not the why behind this blog, there are plenty of places out there that offer this kind of information, in fact what got me more interested was hearing about Nutritiously Natasha, so if you are interested in a food as medicine/nutritional science side of things it is definitely worth giving her blog a read.

For me, there’s a different connection. The food I am eating and cooking is very indicative of my current health. On a physical level, when I am in too much pain to really move, carrying pots and pans, chopping and just the act of thinking up a meal to cook can be quite simply beyond my capabilities. Even on a relatively good day I have to be aware of things like the weight of pans and I wear wrist supports to help stabilise my wrist and thumb. Then of course there is the complexity of a meal, when I am so tired I can’t think straight I’m not going to be making a feast. You are more likely to find me eating a sandwich or pasta and pesto (if I can carry the kettle). On a mental level, depression has a huge effect on your appetite. When I've been unable to get out the house for a while and I've been barely able to cook for myself it starts getting me pretty down, so even the desire to eat can just disappear.

It’s not all doom and gloom though! Cooking isn't just affected by my mental state, it also affects my mental state. When I’m feeling down and I don’t feel like doing anything, actually cooking something and enjoying it has a hugely positive impact on my state of mind. Cooking good food doesn't just feed the body, it feeds your soul. I don’t mean any kind of religious or even philosophical concept here, just that internal warmth that a really good meal can give you. And then you've achieved something! It’s amazing how when I’m feeling down and have no motivation, just starting something is the hardest part. Because once you've started, and then done, it gives you motivation to do more, and suddenly you haven’t just been a total waste a space but a goddamn superhero! And when that doing also includes creating a delicious and nourishing meal for yourself (and maybe others) what can be better?


As my last couple of posts have explained, I’ve been going through a bad patch recently. It’s funny though, after a couple of weeks in bed recovering from my last hospital appointment I seem to have suddenly woken up and started to feel OK. And every day since I have pretty much been OK. It’s not like I’m not experiencing any pain or fatigue or anything, but it’s manageable. My anxiety levels have been minimal and again, manageable and I’m not sure why but I really do feel like I’m doing and handling things OK.  And do you know what else? I’ve been eating fantastic food!


My amazing lunch at Silo Brighton. If you live down here you MUST go! 

Clockwise from top left: Indulgent (hungover) fry up at seven bees cafe, kemptown. Gluten free chocolate cake made by yours truly, a go to easy dinner, prawns with chilli, garlic, slow roasted tomatoes and lots of wilted leaves and lunch at Artisan Cafe (one of my new favourite places)

Sunday, 2 November 2014

I just need to find my mojo

So...it’s been a while (she says emerging out of her pit).

I've actually sat down to write quite a few times. I've got about 4 half written posts sitting on my computer, but none of them felt quite right.

I have been feeling a bit guilty about leaving the last post a massive rant, but then I also have to learn not to berate myself over things like that. I needed to write that post, it did me good, so the last thing I should do is tell myself off about it (easier to say than do!)

You might have guessed from my absence, but I've not been doing so well recently.It’s funny isn't it, ones head. It seems to take very little to completely knock me off course.

So, what’s happened? Well, as you know (because I didn't shut up about it beforehand) I went on holiday over the summer and it was wonderful! Taking the wheelchair was by far the best decision we could have made. I got to do so much! But unfortunately we had an incident 4 days before the end and I think that is where this funk originated from (though not wholly, but it must have been the trigger). Long story short my luggage got lost for a day. We’d just spent about 3 hours on a bus and I was feeling pretty rotten anyway and we needed to go and spend about 2 hours on a ferry after that, so I didn't exactly have any reserve spoons in my arsenal. Luckily the luggage did get returned to me but it meant a 4 hour delay in a busy and hot city of Split. I know to most people this wouldn't really be a problem. Go shopping, go for a wander etc, but this totally knocked me for six. I had no energy for shopping and my mind was consumed with the panic of losing something and the horror of having to drag myself around a shopping center to replace everything. It kind of spoilt the rest of the holiday to be honest. I was anxious and didn't sleep properly and I was in too much pain to really appreciate things.

I thought that would be that, get home from holiday and push on. But ever since I've been back I've been in a slump.

I let it go for a while, I wasn't massively down or depressed. I was still taking enjoyment out of life and friends, I wasn't crying all the time. I thought I was coping.

Then I went to see my therapist.

I should have known it was coming. All the signs were there. I wasn't crying all the time but I was totally and utterly flat. I wasn't really cooking, or writing, or baking. I wasn't bothered about seeing my friends, or ‘doing’. I just was.  There were definitely other contributing factors to this slump. My car finally died, so I am definitely feeling a bit stranded in general, and I had that awful assessment for the rehab clinic. I also had my assessment for PIP in September, which was definitely making me nervous and I just attributed my flat mood to all of these things along with the change of season.
But then I heard from the rehab clinic. I couldn't quite believe it but they are actually giving me a shot! In fact, I think they are doing the most sensible thing possible and I am going in for only one week as an assessment/test. We will see how I cope with the timetable and hospital setting etc, before possibly going on to do a full three week course in the future. I really couldn't have asked for more. They are also putting me in the (only) two bed ward, so hopefully that will be easier than having to sleep with 7 other people in the room. I couldn't have really asked for more. The assessment was a horrible experience, but at least they haven’t just totally written me off/rejected me.

And then a few weeks later I heard the decision on PIP. It was (and I still can’t quite believe it) good news! I actually had a really positive experience in my Atos assessment (SHOCK SHOCK HORROR HORROR) and I've been awarded PIP with no appeal, which I thought that was almost unheard of for an invisible and variable condition. Now I've got it I can get a new car, and I've hired a cleaner and even bought a hoover!

But even though the things that I thought were contributing to the feeling were getting sorted, I was still feeling flat.

So, back to my therapist’s office. Have you guessed that I had a total meltdown?

I love my therapist, he asked me what my instinct was and my answer was to run away. Oh god how I wish I could just hop on a plane and fly somewhere hot and go and run away from everything. And his advice? Do it! But on a smaller scale to my grand ideas of leaving everything behind, and so two weeks ago I ran away for 3 days to a health retreat in Surrey. I had three days of absolute peace, I didn't have to think about anything. All meals were provided, I swam, I steamed and saunaed (totally a word) and had various treatments. I definitely got head space. And now I’m back.

If i’m honest, it didn't really do what I wanted it to. It was amazing and my skin is better for the facial and my body is better from the massage and exercise I got, but my head still doesn't feel screwed on right.

I've been massively anxious recently, having panic attacks much more often than normal and over very little. But I have got more things sorted. I have got a new car through the Motability scheme which will arrive in December, and I've been trying to keep on top of things like paperwork. I've got a cleaner to help with the house, and I even went out last weekend without Mr SF and with my wheelchair, and my friends were (of course) just amazing about it.

That’s about it really. I do feel better than when I had a meltdown in the therapist’s office, but I’m definitely still not right. So please, bear with me whilst I struggle a bit, I just need to find my mojo.



Saturday, 13 September 2014

A rant, because apparently I'm not well enough to get well

So it’s been a while...and what a while it has been! I definitely meant for my first post back to be really positive, all about holiday and achievements and surprising myself. Unfortunately, I don’t think that’s what I need right now. I’ll post about all the positives at some point, but this might end up being a bit of a rant (sorry!) 

So...on the Friday after getting back from Croatia I had my assessment for the rehab clinic. I was nervous as I definitely had reservations about it, but I was also excited. This could be it! The thing that helps me get my life back on track. I’d been doing so much better recently that I felt like I was really in a place where I could get on board with it. I’ve been getting into more of a routine with my wake/sleep cycle and been managing my energy better with afternoon naps, meaning I can actually have 2 bursts of ‘doing’ during one day (we’ll ignore the doubling of the waking up grump!) I’ve been on holiday and actually dealt with my anxieties about it (and we really did have an amazing time). But it all started going to shit when I got there. Somehow I’d got the timing wrong for the appointment and turned up at 3 instead of 1, cue an anxiety overload. However, they were able to fit me in and I met one of the occupational therapists that works on the programme.

Did I mention they sent me a questionnaire to fill in before I went?  (I’m sure you can imagine how much I LOVE patronising and overly simplistic questionnaires). The questionnaire asked you to do various things like colour in this image of a body where you feel pain. Well, my picture was totally coloured in. I literally feel pain from my head to my toes. I get facial pain, neck pain, shoulder pain, arm pain, wrist pain, finger pain. I feel pain in my back and my hips and my legs and my knees and my ankles and my fucking toes. I get pins and needles in my extremities and it can take seconds for a part of my body to go numb. It also asked various things like your walking tolerance (a couple of minutes at most, at worst I can’t get out of my flat) and whether or not you fall (I tend to stumble a lot, but am usually able to catch myself before actually falling over.) They ask you how they can make the rehab clinic better for you to which I responded ‘not scheduling heavy/physical activities in the for the morning’, which I thought was quite a reasonable response.

So I sit down the OT and guess what she has in her hands? My questionnaire! She proceeded to go through it question by question. She asked me where my worst pain was, I looked at her in disbelief. Um....well...everywhere, as I explained on the diagram. She then looked at my answers regarding walking tolerance and posed a rather aggressive question “Well, if you can only walk for a couple of minutes at a time and need to rest every afternoon, how do you expect to do the rehab program?” I looked at her blankly, not quite believing the question to be honest. “Um...well, I thought that the program was there to help me get better and gain my strength”. Her response– well we don’t adjust the programme to your needs, you have to attend all of the sessions or we’ll kick you off (it seems having no spoons isn’t an acceptable answer in this clinic). She went through the timetable which starts at 9am with a physical session every day and goes on until 4 or 5 with only a break for lunch. I’m aware this is the schedule of a normal working day but I can only ‘do’ for an hour or two at a time (on a good day) before needing to have a rest and recoup my energy. Whenever I asked her a question about the programme, her response always included the fact that ‘if you’d turned up at the right time then you would have known the answer to this’. Obviously, it was an honest mistake. I was already feeling dreadful about the fact that I had got the timings wrong, it’s not like I did this on purpose, yet she still felt the need to remind me about this over the session no less than five times.

At some point she brought in a Physio to go through the all important presentation that I missed. By now, they were making it quite clear that they thought I would be best suited to doing a rehab programme in the hospital instead of in the hotel. I hadn’t been prepared for this AT ALL. Firstly, I had only been aware of the hotel based program, and that was what I had in my head of where this would be going. Somewhere where at the very least I have my own room to go to at the end of the day. But no, in the hospital programme there is only an 8 bed dorm (it can get quite noisy, we suggest you bring some earplugs if we do accept you). Honestly, they couldn’t have told me anything worse. I’ve already told you before how I am really not comfortable with spending nights away from my own home. I’m getting better and have spent nights at my parents house without having meltdowns (and of course on holiday, but that’s kinda different). The idea of having to spend 3 weeks living on a ward with 8 other people genuinely fills me with anxiety and unease.  I REALLY need my own time. A space of my own I can hide away in if I need to, and there just isn’t that available. I struggle with sleeping at the best of times, I have nightmares and often wake up in the night. I’m really sensitive to noise even with earplugs in. Add to that the idea of eating hospital food all that time...I’d rather starve!

They said they were worried about my ability to get myself from my room to my sessions without harming myself, or falling over. I found this pretty patronising to be honest. I explained to them I’ve lived alone, without care, ever since I’ve been significantly ill (bar a year with my parents). I’ve never had home help and I’ve always managed. I think this is the point where I realised what was so horrible about the whole appointment, I felt like I’d been attacked for an hour and a half, because their response was ‘You ARENT ill’. I’m sorry? “You don’t have a cold or the flu or anything, you aren’t ill” “Well, I have a genetic disease...” “You have a syndrome, you aren’t ill” At this point I gave up. I couldn’t believe that they were going to fight me about language I use to describe myself. I’m still very uncomfortable with referring to myself as disabled, even though I know that is what I am AND WHO THE FUCK ARE THEY TO SAY OR DEFINE WHAT I AM AND AM NOT.

When I explained my reservations about the intensity of the programme, their response was to tell me that they’d seen thousands of EDS patients so they know what they are doing. I’m no different to them. Oh and another reminder that I have to fit into the programme, they don’t change the programme to fit into the patient. Well, thanks. I have never really fit nicely into boxes. I’ve always been on the outskirts, carving my own way through the world. So I left feeling like once again in my life, I was trying to be squeezed into a box that I had no hope of fitting into to, and yet if I don’t, I will feel like I’ve failed.

I left that appointment feeling like I was bruised and battered, like I’d failed. I have a feeling they aren’t going to let me on to the programme, and even if I get a place, I don’t know if I will be able to do it emotionally or physically. So I feel like I’m back at square one, because I was under the impression that was my last chance saloon. I’m not feeling all that hopeful about it all at the moment....

HOWEVER. There was one HUGE positive about the day, hospital transport. Oh my god this is amazing! Usually the idea of getting to my London appointments is pretty much the biggest worry I have. I’m really not great with trains (can’t walk through the train stations, get stupidly anxious etc) and I certainly can’t drive that far (particularly not in my banged up little motor) so it’s often been a very expensive endeavour getting me there. Until we found out that I qualify for NHS transport and OH MY GOD IT WAS INCREDIBLE! I had a lovely man (Piotr) pick me up at my home in an extremely comfortable and clean car and drive me all the way to my appointment. Afterwards he let me have a cry and a cuddle with my parents before taking me home and chatting to me all the way (I think he could tell I needed some distraction). Seriously, the NHS has some failings but it gets some things VERY right.


So, another appointment that left me feeling less supported and more despondent about getting better, but at least there was a positive about the day. I’ve now had a week to mull it all over and I feel better than I did. At the end of the day, there would be no point me doing a treatment that would cause more harm than good, but I’m left feeling quite miffed. I don’t understand the aggression that I received, or why they’d even ask how to make the programme better for the patient if there is absolutely no flexibility. I’m also very confused, because I was left with the impression that I’m not well enough to do the rehab. I have to say, that makes no sense to me whatsoever. 

Tuesday, 5 August 2014

FOMO and a not-very-summery shepherds pie

**This was written on Saturday morning but then I got whisked off to the beach with Mr SF and our lovely friends after they saw the parade, then I got distracted so it's only being published today! **

I’m a little bit fed up this morning. Ok, so I’m generally not a morning person and am rarely exactly jumping for joy, but this morning it is for a different reason. Today is Brighton Pride. It is, as you can imagine for the most gay-friendly town in England, one of the highlights of the calendar. There’s a huge parade and city-wide parties and events. Everything is covered in rainbows and people are very much in the party spirit. It is a whole day affair with the parade kicking off the celebrations in the morning, with a festival type event in Preston Park and a street party in Kemptown, it doesn’t finish until the last reveller finally leaves. So far since living in Brighton I haven’t been able to go to the parade, quite simply I can’t stand up that long and the idea of being packed in a huge crowd that is just standing there waiting to watch something and relying on my legs fills me with unease. And so this morning I said goodbye to Mr Spoonie Foodie as he went off to do something that once again, I just can’t join in with.

People often talk about their fear of missing out. FOMO is an acronym well used on the internet; people have FOMO about a night out, or a birthday party or perhaps a gig. I don’t think I am alone in saying as a spoonie, I have FOMO on life.

Now I don’t mean to sound too depressed and down. I’m actually feeling pretty happy at the moment. I’m coming to terms with my illness(es) and know that things are moving (albeit very slowly) towards more treatment and help. Mr Spoonie Foodie has now moved in and after an initial 4 or 5 days of him rushing around sorting things whilst I felt uneasy and weird, we are settling into a really nice living situation. I have lovely friends (although too many of them leave Brighton for the big bad smoke) and as I have said before I have an amazingly supportive family. I’ve also got an amazing summer lined up for the first time in three years and I’m so excited. Mr Spoonie Foodie is a teacher so although term time is fraught, he does get the bonus of having a wonderfully long summer holiday. We’ve got a friend visiting for a week who currently lives in Taiwan and we’ve got a 2 week holiday to Croatia booked. With him to help, the flat is much easier to manage and I’m loving having somebody to cook for. So I’m really not at all miserable at the moment, but on days like this my FOMO becomes reality and I’m reminded of all the things I haven’t (yet) been able to achieve.

So, I’ve been thinking and I think I’m going to get a wheelchair. This is something I’ve been considering for a while, but I just haven’t wanted to. I definitely have in my head the idea that if you can walk, you should try not to use a wheelchair (I’m not saying this is right, obviously it’s not, it’s just amazing how strong a role societal pressure, stigma and stereotype can play in your life), and I can walk...just not every day, or very far, or comfortably, or without possible future repercussions. But a wheelchair has always scared me. I worry I would get too dependent on it, become lazy and, without meaning to sound too shallow, I’m rather scared of getting fat. However, I am starting to see how a wheelchair would be so enabling. In a wheelchair, I could go and see the parade because I wouldn’t have to worry about having to stand up for too long. I could go to day trips without worrying about my energy going on just getting myself around and Mr SF and I could actually ‘walk’ along the seafront once again (well, parts of it at least!) I’m scared. I’m scared because I’m worried somebody will judge me when I get out of it to look at something or go into a shop. I’m scared that I’ll feel different and that people will treat me differently, but when I think of what a wheelchair might let me do, those fears just pale in comparison.

Illness (be it mental or physical) can make your world very small, it is time to expand mine again!

I wasn’t going to post about all this stuff, what I actually wanted to tell you about was my shepherd’s pie I made last night. Oh my! I had leftover meat from a slow roasted leg of lamb and despite it being summer and really not the time to eat shepherd’s pie, I really couldn’t resist. This is a fabulous recipe to use up your leftovers as you can also use any leftover cooked veg, adding them in at the end with the broadbeans and even turn your roasties into mash for the topping if you have any spare.

I didn’t exactly measure or weigh everything particularly carefully, but here’s how it went...
I had a leg of lamb that I roasted, this weighed about 2 kg. 3 people ate that roast, but two of them were Mr SF and a male friend so we can probably count that as 4 people’s worth of meat. The shepherds pie feeds at least 4 people and is filling heavy. With a couple of side dishes you could easily stretch that to five or six people, just don’t let Mr SF serve himself (he ate HALF this shepherds pie, wondering why he could barely move afterwards). If you have less meat it is really not a problem as you can just add more veg, some lentils would work very well to bulk it up if you needed to. Just add more liquid and simmer them until cooked along with the meat.  The broad beans go really nicely with the lamb but the only reason I used them is because I have been getting organic boxes recently on a half price deal and I have been INUNDATED with the buggers! This was my last lot to use up though (and I’m going to request no more thank you very much!)

Ingredients

Leftover roast lamb(about 750g)
Large onion
Carrot
2 cloves garlic
3 large (ripe) tomatoes (or you could use a tin or peeled plum tomatoes)
1 teaspoon sugar
Handful of broad beans
Approx 300ml chicken stock
A good handful of fresh herbs – I use what I have in the patio which is sage, tarragon, rosemary, parsley, oregano and basil. Some dried ones would be fine here too, just add them with the stock. 
Olive oil
Salt and pepper

3 large baking potatoes
1 sweet potato
Butter

Dice the onions and carrots. Pod the broad beans by splitting open their cases and popping out the beans.

Get a pan of water on a rolling boil and add the broad beans, cooking them for 2 minutes before dunking in iced water or running under a cold tap until they are no longer warm. I like to take their greyish skins off and they should just pop out of them once they’ve been in the water, though sometimes they need a little encouragement with a fingernail. I also halved/quartered them but this really isn’t necessary.

On a low heat, sweat the onions for about 5 minutes until beginning to soften. Once they start to go a bit translucent, add the carrots and garlic. Cook for another 10 minutes until the carrots are softened, stirring to ensure nothing burns.

Add the tomatoes and sugar (this just takes away any back-of-the-mouth-tang some tomatoes can have) and turn up the heat to medium-low. Cook until the tomatoes start to break down (about 5 minutes) before adding the lamb (plus the fat/juices that have congealed onto the plate, not pretty I know, but by gum is it tasty!) and the stock – you need the liquid to come about ¾ way up the lamb.

Simmer this mixture gently for about 20 minutes until the meat has softened and is easily broken apart with your wooden spoon. This process may take longer depending on how tough your meat was to start with, but fear not because this should revive any tough old soul. Add extra liquid if it starts to dry out. The mixture is ready when the liquid has thickened and sticks to the meat and the meat is fall-apart tender. Break up the meat into bite size pieces with your spoon. Add your chopped herbs and broad beans, stir well and taste for seasoning, adding salt/pepper if necessary. It was difficult not to eat it all at this point and would make an amazing alternative meaty sauce for pasta.



Whilst that is simmering, peel and cut up your potatoes (sweet and non). Add them to separate pans and cover with cold water. Bring to the boil and cook until tender (10-15 minutes). Drain and let steam for a minute or two before mashing with LOTS of butter (I used about 50g in all), salt and pepper.

Assemble your pie. Make patterns with your fork not just because it is pretty and fun, but also because the uneven surface will ensure more crunchy brown bits (and we all know those are the best). If you fancy, cover the potato with grated cheese. Then pop it in the oven at 180 for 30-40 minutes until the top is golden and crispy and the sauce is bubbling.



A delicious homely dinner, not the prettiest but nobody will care.




Monday, 28 July 2014

Me and My Pills

**Trigger Warning. I’m not too hot on the internet lingo but I will be talking about my experience with antidepressants in this post. This IS NOT pillshaming, but just my experience with them. If you are feeling particularly vulnerable about your medication, this may not be the best post to be reading.**

Things have been settling down here at Spoonie Towers since my manic week in and out of London (Yes, for me, that was manic!), but I have a confession to make.  I did something that I definitely was not supposed to do and just stopped taking all my pills. The medication I used to be on was...

Duloxetine – an SNRI antidepressant that can also be used for neuropathic pain management

Gabapentin – originally developed as an anticonvulsant, this is now one of the first drugs prescribed for neuropathic pain. It is also used ‘off the books’ to help with anxiety and insomnia.

Nortrityline – a tricyclic antidepressant which apparently helps to regulate your diurnal rhythm (day and night) and is used in chronic pain conditions.

I have been on antidepressents at a number of points in my life. When everything first went to the shitter it took me about 3 or 4 months before I had the courage to say to myself – you need help. And that’s exactly what these pills can do. They can lift you out of your hole enough that you are actually able to look over the edge and think, ok, maybe I can do this. When I’ve needed them, they have got me to a place where I can actually help myself and have been AMAZING. I dread to think where I would be now if I had listened to my dickhead of a close confident (I think that there is no need to name and shame, but anybody who knows me will know exactly who I am talking about) and never started taking anything.

I started this particular set of pills about 2 years ago now when I saw a private rheumatologist (the one who then referred me on to Professor Grahame). At first I just took nortriptyline before we added gabapentin into the mix, testing out the effect of different doses. At this point I didn’t want to go onto a strong antidepressant. The last time I’d tried to go on them I spent a week feeling like I had taken drugs with none of the high. My skin was hypersensitive and it was painful for anyone to touch me, I felt panicked, my heart was racing and I couldn’t sleep.  However, after about a year of putting it off and becoming increasingly depressed, isolated and anxious, my GP and I decided it was time to give them a go.

Something that I (and Mr SF in particular) struggle with about antidepressants is it is so hit and miss and the research is often tenuous at best. It isn’t like they test out these supposed non working chemicals in your brain and then match them up to the best drug, instead they just hand out pills like they are sweeties and hope for the best. I think it is quite dangerous to hand out antidepressants without some other complimentary therapy to help the patient in coping. Pills are only one part of a picture, and they are much easier to hand out than effective talking or coping therapy (which as we all know are massively oversubscribed on the NHS).

I have now been on this concoction of pills for the best part of a year, and in that time I don’t seem to have got any better. In fact, if anything, I seem to have deteriorated, both physically and mentally. My anxiety has increased tenfold (though that is definitely MILES better since I actually got to the London appointments), my depression worsened resulting in self harm and my activity tolerance has just dropped dramatically. Then, the other week I ran out of my pills. I tried for days to get to my doctor, but she only works part time and is always booked weeks in advance. So I did the thing the docs always warn you off doing and I said ‘fuck it’. I’m fed up of taking more than a dozen pills every day, worrying that if I miss one I’ll go mad (except that I have never really noticed a difference between the days I take them and the days I don’t). I just stopped...and this is NOT ADVICE THAT ANYBODY ELSE SHOULD BE FOLLOWING but I feel so much better. I am definitely in more pain than before, and that is obviously utter shite, but I feel alive again. I feel like I’ve been deadened inside for so long and that I am finally remembering who I am underneath the haze of drugs. I am passionate again, I’m re-finding my feminism and I am wanting to tackle the big issues. I feel like I’m finding a part of who I lost when I was 20 and first went a bit batty (I’m allowed to call myself batty!) It’s wonderful. Oh, and I haven’t gone bat shit. I’ve had bad days, obviously, but I actually think I’ve had less bad days in the last month than I had in the month before that. Oh, and I’m hungry again! I don’t think I’ve been actually hungry for months. I’ve just eaten enough to get me by, often only one meal a day. Now, I’m waking up hungry and wanting to eat., this has never happened in my life before, but obviously the hungrier I am and the more energy I get into my body the more I will be able to do (in theory at least).

I haven’t stopped treatment. I see a private psychotherapist once a week that I have been seeing for about 4 years now(who is DELIGHTED I am finding my passions again – he thinks I actually look different since I’ve come off the pills) and I stay in regular contact with my lovely GP. I *know* this isn’t the way to do it and I certainly don’t suggest that anybody else does, but for me, for now, it was the right thing to do. I worry about what will happen when winter comes, as I know I suffer from SAD, but there is no point worrying about it now. Plus, I evidently wasn’t on the right head meds.

So yeah, that’s happened. I still take over half a dozen pills a day in the form of vitamin d and painkillers and every three months I go and have a b12 injection to help boost my mood and energy. But for now, I just want to feel and think and be me. Not the me that is masked by deadening drugs and is hidden behind a haze of apathy. I don’t think that is so wrong.