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.

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.

I only bloody got to London twice in one week!

Last night’s blog post was quite cathartic for me. After last week’s London adventures I have been so exhausted I hadn’t really had a chance to organise my jumble of a mind and I think I started to do it. It has a bit of a strange tone to it I know, but that’s because this week has been so strange. Not only did I actually get to London twice in a week (I still can’t quite believe I did this) and stay at my parent’s house for the night which were major achievements, but I also had two pretty major and massively disappointing appointments.

I’d like to start with a caveat, I think the NHS is freaking fantastic. The fact that I am able to access any treatment and I don’t have to have the stress of the cost on top of it is amazing, I dread to think where I would be mentally and physically if I was in America. However, the NHS is not perfect, a point on which I think we all can agree. I also understand that most doctors do care, and do want to help, but are tied into a difficult system that they can't necessarily change. Now that is over, I'll get started.

People with EDS are known as zebras in the medical community. Apparently medical students are taught that when you hear hooves, think horses not zebras. That is, the most likely cause is the most common. However, every now and then you get someone like me who comes along, who is most certainly not a horse. I am a loud and proud zebra, but it’s taken them over 10 years to work that out. Over the years I’ve been passed along to various specialists; rheumatologists, psychotherapists, endocrinologists, pain specialists, physiotherapists (and the list goes on). I’ve had MRI and CT scans and am more familiar with bloods than a phlebotomist. I’ve seen private psychiatrists (who told me that I was anorexic, which couldn’t be further from the truth!), osteopaths and counsellors, and I even had a yoga instructor for a while with whom I spent an hour a week breathing. And yet, it took over 10 years for a doctor to ask me to bend my body around, to touch my extremely soft skin and noted the scars that appear from nothing. It took them ten years to take notice of the fact that 80% of the time when I stand up my vision blacks out slightly and that it was more than just being tired all the time. This was ten years after the first osteopath ever remarked on quite how hypermobile I am and two years after Mr Spoonie Foodie (a biomedical scientist) suggested I had EDS and Marfans. As you can imagine, it’s been very frustrating decade, but that is now behind me and I have been diagnosed, which gives me access to a lot more treatment.

As I said before, Professor Graham is the specialist of all specialists when it comes to my condition. So you’d think, that once he referred you on, your next consultant would read his notes about you and then take things from there. But no, apparently the NHS is incapable of speaking to one another, so instead they waste my time, the consultants time and their money by repeating this same consultation again and again and again. They're cutting services left right and centre and yet there doesn't seem to be enough communication within the NHS to prevent unneccesary and repeated trips. Why can’t an initial contact like this between patient and consultant be done over the phone, or by skype? Surely the specialists understand that getting to/from London and these appointments takes everything out of people with these conditions?  In the past year I have had no less than five appointments which were EXACTLY THE SAME! Well, six if you include the one with a geneticist who was a prick and refused to do the gene test and also said she didn’t think the Professor Graham was right. But that’s beside the point.

So (and I can imagine you can see where this is going) last week’s appointments turned out to be the biggest disappointment ever and actually a fairly unpleasant experience. My referral to Dr Ingle’s clinic at the national hospital was, from what I understood, the start of a set of autonomic tests. At Dr Ingle’s clinic I was met by a consultant who didn’t introduce himself to me. He then marched off along the corridor far quicker than I was able to walk and when I explained that I couldn’t go that fast he didn’t slow down, so I was left peering into each doorway trying to see where he had gone. It was pretty humiliating to be perfectly honest. The appointment ended up being only 20 minutes long and wasn’t actually the start of testing at all, but basically him talking at me about the condition. Now, don’t get me wrong, this was massively useful and quite interesting. It turns out new research suggests the POTS is actually connected to the hypermobility. In most people, blood pressure is maintained by constricting and relaxing of the blood vessels, thereby forcing blood around the body. So when we stand up, the vessels in our legs should constrict in order to maintain blood pressure around the body and counteract gravity. It seems that what happens in hypermobile/POTS patients is that our vessels don’t constrict as they should and instead, in order to maintain a steady blood pressure and not faint, the heart pumps quicker. This is linked to many of the fatigue symptoms, as well as palpitations and of course, fainting. There has been a lot of new research going into this and there are quite a few new treatment options starting with drugs, but of course before you can get these you need to confirm that the patient has POTS. To do this they run tilt table testing, which is what I thought I was going to start last week. Well, no, once he’d done talking to me that was it. I was sent on my way and told I would have to wait EIGHT TO TEN MONTHS just for the testing to begin. Oh, and he also casually dropped it in that this might of course not be POTS and could be something more serious like Addison’s disease or a tumour (but you know, we’ll just wait a year to find out!). I mean seriously? What the hell was the point in that appointment? Why didn’t they just call me up and have a chat over the phone instead? And waiting another year? I know that the equipment for these tests etc is expensive but that will be nearly 2 years since I got diagnosed before even getting tested, let alone beginning treatment! I shouldn’t complain, at least I’m on the waiting list finally, that and there is nothing I can do, but it is so incredibly frustrating to be told to just keep your life on hold for another year before we can even think about starting to get you better. I left feeling horrendous, in loads of pain and absolutely exhausted. And all that to be told I’m just going to have to wait for the best part of a year.

As you can imagine, I wasn’t massively looking forward to Thursday’s appointment. This time I was under the impression that this was the assessment to get into the inpatient rehab clinic that seems to be the only major treatment available for EDS. I was prepared for another long waiting list, but what I wasn’t prepared for was to find out that this wasn’t the assessment. No, this was the pre assessment before I actually have the assessment for the rehab clinic. Um...what? Surely the referral from Dr Graham was the pre assessment needed by a rheumatologist that would then be followed by the assessment for the clinic? Apparently not. So instead, I had an hour long appointment (to be fair she was quite thorough) where she literally repeated everything Professor Grahame had done, down to the point that where I missed something out that was in my notes she’d then ask me about it...I’m sorry, but I REALLY don’t understand why on earth I went through that appointment. She again checked my arm span/height/hand/foot ratios for Marfans and came up with the same conclusion as the Prof that I had incomplete marfanoid habitus and confirmed I had EDS (though gave me a lower 6/9 on the beighton criteria than his 8/9). So now I am going to have to wait another 2 months before I can see the assessment team who will decide whether or not I can actually go on the rehabilitation programme and then another 6-8 months before a place becomes available. I mean, thank goodness I’m finally in the machine and chugging away but I feel like my life has been on hold for so long. I just want some practical help with how to move it forward just a little.

On that note, I’m doing my exercises that the physio gave me. They are basically very slow resistance based exercises that strengthen the muscles, and they seem to be working! For the first time in my life I actually have some bicep definition and I am noticing how I am now able to do more of the exercises as well as feeling less wobbly whilst I’m doing them. It’s really exciting to actually see and feel the progress I am making. I’m still not able to walk for much more than a couple of minutes and there are days where that is still a struggle, but I’m seeing some improvements and that’s all I need.

Although its slow going, things are definitely heading in a good direction at the moment. Mr Spoonie Foodie moves in in two weeks which is ever so exciting! I’ve got some sorting out of my shit to do first and I’ll definitely have to be tidier(!) but I really can’t wait. More and more I feel like we are a proper team. We haven’t had the easiest of relationships, neither of us are the easiest of people, but I think that’s what makes us so strong. Also, my parents absolutely love him which has got be a bonus!

So perhaps my odd little metaphor at the start of the last post makes a little more sense now. I am definitely on the verge of some very big changes, but some of them are taking a bloody long time to come.

I wasn't sure where this post would go, so it's quite long

I must have started this post five times already. There’s so much I want to say but so little organisation inside of my mind at the moment that nothing is coming out. I know this doesn’t really make sense at the moment but it feels like everything is changing, and yet not really. It’s like I’m on the edge of a precipice and I know that something is going to happen but maybe my parachute will open and it’ll all be quite peaceful. Ugh, I’m not doing very well on the metaphor front but my mind is starting to feel a little let frenetic so hopefully I’ll actually get somewhere now.

This week has been a bit astounding. And utterly exhausting. And frustrating and angering and makes me want to shout at the NHS for its inefficiency. And it has also been a week of insane achievements.

I should probably stop talking quite so vaguely now and let you in on what’s been happening.

I’ve been dreading this week.

Way back in August 2013 I went to see Professor Rodney Grahame. If you have arrived on this blog from researching Ehlers Danlos Sydrome you may well know of him already. Professor Grahame is the specialist of all specialists on hypermobility syndromes. After a long consultation he finally confirmed what I had known all along, that is that I had something physically wrong with me. A condition that wasn’t just a post viral problem, or a vague fatigue related issue, but a definable condition that definitely wasn’t in my head. These diagnoses were Ehlers Danlos Sydrome, Incomplete Marfan Syndrome and Postural Orthostatic Tachycardia. Getting these diagnoses has, in general, been a really positive thing. ME and Fibromyalgia are such vague terms and there is a certain part of the medical community who very much look down on these conditions and dismiss them. They are wrong, but when doctors aren’t even interested in helping or dismiss you it makes you wonder if you are just making it all up, and I’m certain that everybody who has ever suffered from any fatigue related issue will have experienced discrimination in some form or another regarding their illness. People think you are lazy, or just feel sorry for yourself. They tell you that everybody wakes up with aches and pains, feeling tired and so on and you just have to buck and get on with it. They make you feel guilty when you can’t work, or feel like a failure that you haven’t been able to finish your degree.

They make you feel like it’s your fault.

I’m not going to lie, finding out that it wasn’t my fault has been a pretty amazing thing to learn. It’s like a weight has been lifted off my shoulders and I don’t have to feel guilty any more. There have been so many times when I’ve just wondered if I’m a hypochondriac, and maybe that those people are right. It’s quite a relief to know I couldn’t have done anything about this stuff, that I didn’t do something wrong. But I digress...So after the consultation with Professor Grahame I was referred on to two clinics. I was referred to Dr Ingle’s team at the National Hospital on Queens Square who specialise in POTS. There’s been a lot of new research going into this recently (and I’ll explain more about the condition at another point) and his team are pretty much at the forefront of access to it from what I understand. I was also referred to the Royal National Orthopaedic Hospital in Stanmore for a three week inpatient rehabilitation clinic. Well, both of the initial appointments ended up being this week and as you might have guessed they were both in London (well one was in North London but that’s just details).

I’ve mentioned this before but I really don’t like going to London...well to be honest I don’t really like being too far away from my home full stop. At the beginning of this year I was definitely verging on agoraphobic and I think I could easily slip into that sort of behaviour. And there is, I think, a pretty valid and logical reason behind this kind of anxiety. I am genuinely terrified of the prospect of being stranded somewhere feeling horrendous and not having the strength to get myself home. It’s happened before and I’ve had to call my dad to come collect me from stations where I pretty much dragged myself off the train. My energy levels are low at the moment (though I am due a B12 injection and I must get that done this week) and even after an hour or two of just chatting I get visibly tired. Colour drains from my face, I am confused and struggle to follow a conversation, I’m yawning all the time...and that’s without doing anything physical. The idea of being away from home for a long period of time (I mean a few hours plus) really makes me anxious. In general I socialise at home, I shop mostly locally or in one of a couple of ‘safe’ supermarkets that I can drive to and I don’t like spending a night away from my own bed. I hate the idea of being ill around other people. I hate people seeing me that way and being so totally useless. I don’t even like it around my parents and I’ve only fairly recently become comfortable with Mr SF seeing me in that way regularly. I have maybe 3 friends that I let see me in my bad states and in general I just prefer to deal with it alone.

It is quite exhausting dealing with people trying to cope with how ill you are. It can be difficult to hide the amount of pain I am in or to not show how exhausted I am, and it is very difficult for people to understand that actually you can’t have a causal conversation because ALL of your energy is going on not being sick through pain or staying standing up to get to the toilet. It is so inconceivable to most people the idea that getting yourself to the bathroom could take most of the energy you have, and don’t get me wrong thank goodness that is the case because I wouldn’t wish this upon my worst enemy, but that chasm in knowledge can make it much simpler to just be left alone for fear that you’ll otherwise just push everybody away.  And thus, when energy is SUCH a precious resource, the idea of wasting it on something like a train journey just seems ridiculous. Unfortunately, my condition isn’t just that I experience the pain and fatigue as and when it occurs, but also that by overdoing it even slightly, there are giant knock on effects for a long time afterwards on my pain and energy levels. So going to London isn’t just a physical feat on the day, but I know it will knock it out of me for most of the week, if not more, to follow.

However I knew I had to get to these appointments. I’d already put off the POTS clinic in May because I just couldn’t face it and so I made a plan. I have a friend who works in London and lives in Hove. I thought that Hove would be a much easier station than Brighton to deal with as it is much smaller and obviously quieter. As I have finally got a disabled parking badge (it’s amazing, it is honestly opening up a whole world of possible activities now that I don’t have to worry about how to get there/walking too far etc) I decided to drive to Hove to meet her and go up with her on the train to Victoria. There my mum would meet me and we’d go to Queens Square by taxi. I was so close to bailing out. I text her in the morning saying I wouldn’t be able to make it and had a cry on the phone to my dad saying that I couldn’t do it. But then I had a shower and washed my hair. I put the war paint on and...well... I did it. Having my friend with me (she TOTALLY gets anxiety which is massively helpful) meant that I was distracted and had some support on the way, but to be honest the hardest part was leaving the house. I don’t have an issue with the train itself, it is the getting out and getting on my way that I find ridiculously hard. And the anticipation. And the thing was, it was hard. I felt dreadful after my appointment (I think I’ll leave the content of these appointments to another post as this one is already ridiculously long) and was totally wiped out with no energy. I had to call Mr SF to come and meet me at Hove to drive my car home as I was not in a safe state to drive and that was really unpleasant. But, I did it. And it wasn’t THAT bad. I dealt with it. I did call Mr SF and he did meet me and that was the most sensible thing I could do. It turns out I am actually eligible for hospital transport which I will set up this week so the hassle of getting there will be taken away, but I actually did it. I conquered my anxiety. I didn’t think I could.

My sister always used to say to me that when you think you can’t go on, you've only done half of what you can do, and it’s so true. It’s only when you really don’t think you can cope any more that you see what you are made of. I don’t want this to sound like I’m bragging. I’m not that strong really...what I haven’t told you is that before I got out the house on Tuesday I self harmed. I cut my thigh with scissors, deeper than I’ve cut before. I just had so much emotion inside of me and I didn’t know what it was and I couldn’t cope with it. I know it’s not the way to deal with things, and it’s funny (funny odd not funny haha) because I only did it for the first time ever in March of this year, but I also can’t dwell on it. I didn’t cut myself as much as I had done in the past and I still got on and achieved something. So I’ve got to just focus on that.

So that was Tuesday, I still had to get to north London on Thursday morning for 10.40 for my appointment at the RNOH with Dr Mittal. I think I’ve mentioned before that mornings are my worst time of day. It is no exaggeration that the first sensation I have on 6/7 mornings is pain. And it tends to be at its worst level on first waking before I get moving. And even once I’m up it takes me a couple of hours to really ‘come to’ and get on with my day. The level of pain and the grogginess I feel just make mornings horrid. So, a morning appointment in Stanmore is pretty much my idea of hell and I knew I would have to spend the night at my parent’s house in Potters Bar. I hate the idea of spending the night anywhere that isn’t my space. What if I have to get up and I make too much noise? What if I don’t have painkillers or can’t find something? What if what if what if! And a night in my parent’s house followed by a morning appointment only the day after using up all my energy to go to London was literally the worst thing I could imagine. But I have been waiting for this appointment for nearly a year; I knew I had to do it. I ended up getting a taxi, leaving Brighton at around 9 so by the time I got there I was ready for bed (after a quick snack of course, G-d forbid I see my mother and she doesn’t feed me!) And once again, I did it. It was hard, I felt horrendous ( I still do, I had to cancel my plans this weekend and I don’t think I’ll be doing anything this week), but I did it. I’ve got to say, I’m pretty fucking chuffed.

I’m amazingly lucky to have incredibly supportive parents and an amazing partner. It is not easy for them, I get angry and moody and I can take it out on those closest to me. But their support never wavers, they never judge me, and although I get lonely, I know that I’m never really alone. I woke up with a migraine on Friday morning. It’s no surprise really, this week has been really fucking hard on me emotionally and add that to the discomfort of spending a lot of time travelling it really can only lead to tension. When I first started waking up and noticed the pain I tried to keep myself relaxed, calm and in a dozy state, but it was just getting worse and worse. I thought my head was going to explode and I started to panic. Mr SF had already left for work so I couldn’t call him and I ended up calling my dad. And just like he used to when I was younger, he talked to me in a very calm and monotonous voice until my panic subsided, until I stopped crying and was able to cope with the pain some more. He made me feel like I wasn’t a complete failure for calling him and he reminded me of how well I’d done this week. I know that most twenty six year old women would be embarrassed that they had to call their daddy for something like that, I just feel amazingly blessed I have a father who I can turn to like that.

This week has been an amazing achievement for me, but it’s also served to remind me just how wonderful my support network is. With them, I know I can get through this. I have so much more to say, but I don’t feel the need to blurt it all out immediately any more, I’m pleased where this post has taken me. Also it’s late now and I’m ridiculously tired. 

Strawberries, strawberries everywhere, and I want to EAT THEM ALL!

Seriously, I love strawberries. I love the teeny wee wild strawberries that grow like weeds in the gardens and I love big ones. We are definitely a nation with a love affair for strawberries; where else is strawberries and cream such a celebrated dish? However, something I don’t like is strawberry jam. Well to be more accurate I don’t actually like any cooked fruit in sweet things and jam definitely has the taste of cooked fruit. So, what am I to do when strawberries are on a really cheap offer and I can’t eat them all before they go off? Well, make strawberry curd of course!

I first started looking into the idea of curds when I was planning my sister’s wedding cake. I wanted to do something along the lines of a Victoria sponge but with a bit of a twist. As I don’t like jam that was off the table- I made everything from scratch and I know there is very little point in me making something I don’t like because it is much harder to tell when you’ve got it right. I could of course just put fresh berries in the centre, but it just felt a bit dated and done. After a bit of hunting I found that you can make a curd with many more fruits than just lemon. Now, I hadn’t ever actually made any kind of curd or even tried one before I first attempted this pink treat. I think it’s because I associate curd with lemons and I don’t generally like sweet lemon things (ok, so maybe I am a little fussy!)So I found a recipe (this is the original one http://www.lavenderandlovage.com/2013/04/studio-pottery-baguette-and-fresh-strawberry-curd-recipe.html) and I followed it. Once I tried it I knew I’d never go back! It has the taste of fresh strawberries, with a creamy, buttery texture. Quite simply it is DELICIOUS! Mr Spoonie Foodie says he doesn’t like curds, but I really can’t understand why! I found the original recipe a bit too sweet (well, quite a bit too sweet as I cut 1/3 of the sugar and it is more than sweet enough) and I felt like lime would be a better flavour lifter than the orange that she used.

Then of course, I had to do something with the curd – I can’t just have it sitting in the fridge and tempting me. I didn’t fancy the hassle of making a large cake so I decided to keep it nice and simple. Vanilla cupcakes with a whipped cream topping and a drizzle of strawberry curd on the top. I’m not going to lie, for a simple cake they were pretty spectacular! This recipe is the base for pretty much all of my cakes. You can use medium or large eggs but try to use eggs that are around 60g in their shells – either large medium eggs or small large eggs! I often don’t use vanilla in my cakes but i felt like it would really compliment the flavour of the cream and curd. Also, I have started to use the sexiest ever vanilla. It’s vanilla bean paste, it contains the vanilla beans as well as the extract and it is just phenomenal. I’ve never had vanilla flavour like it without forking out on pods. It makes fantastic ice cream too. It is very strong and although the bottle says you can use like for like with normal extract I find it extremely overpowering and tend to use half or even less than it states for extract in a recipe.

The colour of your curd is going to depend on the colour of your strawberries, but don’t be afraid to use ones you’d otherwise throw away (cut off any really mushy bits though). The process of thickening the curd takes quite a long time and will be dictated by the water content in the fruit, but with a little patience comes great reward!

Strawberry Curd

250g fresh strawberries

200g sugar

125g butter

4 eggs

1 lemon

1 lime

Wipe any dirt away from the strawberries and chop off the leaves and stem. Put them into a blender and blend whilst you prepare the rest of the ingredients.

Zest and juice the lemon and lime into a heatproof mixing bowl. Add the sugar and the butter cut up into cubes.

Break the eggs into a separate bowl and beat them well.

Put a small amount of water into a pan (that you can fit the bowl on top of) and put on to simmer.

By now your strawberries should be completely blended and you shouldn’t be able to see any pips. If you can see pips still you can always strain them out, but I don’t find that it’s necessary (and neither did Karen from lavender and lovage so I feel ok about that!)

Add the pureed strawberries to the mixing bowl and set it on top of the pan of simmering water. Make sure that the water doesn’t touch the bottom of the bowl, as this will cook it too quickly. Mix everything together and add the eggs.

Keep stirring everything as the butter melts and the curd thickens, make sure the water is still just simmering underneath or you will cook the eggs *. You want the curd to be able to thickly coat the back of your spoon, I find this takes at least 20 minutes and has taken longer, so don’t be discouraged.

When ready, pour into sterilised jars and allow to cool before sealing with a clean lid (or just cling film).

This recipe makes the perfect amount to fit in two bonne maman jam jars

*If you are a little enthusiastic in the cooking stage and find that you have small lumps of scrambled eggs in your curd do as the hitchhikers guide to the galaxy tells you, DONT PANIC! Just strain the curd through a sieve and voila! Disaster averted.

Vanilla Cupcakes

120g self raising flour

120g butter (at room temperature)

120g sugar

2 eggs (at room temp)

½ teaspoon vanilla bean paste

If you are anything like me and rarely organised enough to take the butter and eggs out of the fridge in time, then I have two little tricks. For the eggs, fill up a bowl/jug warm (not hot) water and let the eggs soak for 5 minutes. Hold them in your hand for a minute after you take them out the water to feel if they’ve warmed up enough. For the butter, weigh it then grate it straight into the mixing bowl. It’ll be soft and distribute itself easily.

Preheat the oven to 180C and line a cupcake tray with paper cases*

Cream together the butter and sugar and vanilla until it is pale and fluffy. In my kitchenaid it takes about 5 minutes, more is more at this point!

Break the eggs into a bowl/jug/mug and beat them with a fork.

Add the eggs in three stages, beating them in fully before adding the next bit.

Sift the flour into the bowl and fold it in until it is JUST mixed in. Any more will develop the gluten and result in a chewy cake.

*aren’t these ones just gorgeous! I absolutely love the way they look but they’ve taken a bit of playing with to get them right. Unfortunately, despite what they might tell you they are definitely not greaseproof or non stick. What I do is line them with normal cupcake cases (in a light colour) pushing the case all the way to the edge and bottom. This way the cake is easy to get out without losing half of it to the case and they don’t look all greasy when they are cooked.

To finish the cakes off I just whipped up some cream until it reached the soft peak stage, no sugar because the sweetness of the vanilla and the strawberry curd is more than enough, and then smeared that on top and drizzled with strawberry curd. Unfortunately these will only last an hour or two before the cream weeps so they really can only be assembled just before serving. Doesn't take long though!

I'd love to hear what you think about the recipes, do let me know how you get on if you try them. 

Sometimes it's the littlest things

I’m not really one for grand romantic gestures (which is lucky really because neither is Mr Spoonie Foodie!) I mean, if somebody decided to whisk me off on a private jet to a seclude beach with warm water clear waters, a hammock under a tree and a mango shake in hand, I probably wouldn’t say no... but we all know that isn’t real life. But that's irrelevant, it is often the littlest things that really get to me.

When I was younger I went out with a boy for a number of my teenage years. He is, in fact, the only ex that I am still friends with to this day, but that’s another irrelevant fact. One day some of my friends asked me what the most romantic thing he’d ever done for me. My reply was instantaneous, I knew exactly what to say. “The time he picked up lighter fluid for me because he knew my Zippo had run out”. Their jaws dropped. They stared at me disbelieving. “That. Is not. Romantic” they chorused. Maybe not, but even to this day I remember how it made me feel loved. Perhaps you agree with my school friends but it really touched me that he would just think of me like that.

I don’t particularly like asking people for help. I think it is because I so often do need help that I can feel like something of a burden on people, especially those close to me. I know that this is a common feeling of people who suffer from any kind of long term health condition, and it really doesn’t matter how many times people tell me I’m not, I still feel that way. I think that is why little acts of kindness or generosity really touch me. On Thursday I was lucky enough to experience two such acts. But before I tell you about them, I’m afraid I’ll have to set the scene somewhat.

On Wednesday evening I went to dinner at my friend’s house who had held the party over the weekend. I had left my car there after the party as I was definitely not in a fit state to drive it home, with the intention of driving it home after I’d been for dinner. Another fantastic evening was had (all traces of anxiety there are now gone!) and off I went to drive my little motor home. Except when I got to my car I found it unlocked and not working. Cue a slight panic! That’s when I noticed some paperwork on my seat that definitely wasn’t there before. It turns out my alarm had been going “persistently” and the council had been called to turn it off as it had been deemed a nuisance. OK. Except that the paperwork I had been left was left blank, with no contact number and no information on what on earth they had done to the car that left it defunct.

I took a taxi home somewhat shaken and confused. That night in bed, my left leg went mad. I was in agony. It felt like the pain went right to the bone and it didn’t matter what I thought about or what position I was in. Eventually at around 3am I gave in and moved into the little room, took two tramadol and watched rubbish to keep my mind occupied. I think I drifted off at about 7am and slept for four or five hours. Now, I don’t know about you, but I am super sensitive to a lack of sleep (to be honest I’m super sensitive in most respects, I’m like a delicate flower!) When I don’t sleep, I go full on bat-shit. I have NO control over my emotions and my general reaction to most things on those days is just to cry due to a continual feeling of being overwhelmed. So...there I was, having had no sleep, worrying about this noise abatement notice and I had my first physio appointment. I don’t know what I was expecting, but it definitely wasn’t to go over and over the shitty things in my life. It is as if people don’t read your notes and you have to go over the same stuff again and again and I'm just tired of it. I’m fed up with that other people trying to make it seem like it's okay that I can’t work, or go to see my friends if their 20 minutes down the road and I don't have the money to get a taxi. What I want from her is practical help on how to get my body fitter and stronger, which in the end is actually what I got (after about an hour or so of crying). I really wasn’t in the best mental place to have dealt with talking about all the negative stuff and I left feeling pretty low. When I was waiting for the bus I had those sort of tears that just come out, like the dregs of emotion. It was by no means uncontrollable hysteria, just silent tears behind my sunglasses with the occasional sniffle, when a truly lovely man just turned to me and said ‘Are you ok?’ I actually lied and said it was hayfever but we got chatting and if he knew I’d been lying he certainly didn’t let on. That simple act of kindness totally changed my day. We carried on chatting on the bus until I got off and he totally took my mind off things and put a smile on my face. It turned out he worked for Mind, so whether that made him somewhat more aware of other people’s emotions or whether he was just a nice guy I don’t know, but all I can say to him is Thank You. I find it amazing how often people just ignore what is going on around them. A simple act of offering a few minutes of your time can totally transform someone’s day. Maybe next time you see a mother struggling with a buggy you could offer a hand? Or if like him you see someone crying, just check and see if they are ok. It’s unlikely someone will regale you with their life story, but if they do, you probably won’t ever know what a difference you made by just being there to listen.

The other act of kindness isn’t actually so little. Last year I heard about something called The Depressed Cake Shop. It is an awareness campaign for mental health where local people organise pop up shops selling only grey cakes to raise money and awareness for mental health charities. I’m sure I’ll blog more about it at another time but I got involved with it and as a result have been lucky enough to meet and become friends with Lucy. Lucy writes an incredible blog http://imbakingfree.blogspot.co.uk/ which has been one of my biggest inspirations for setting up The Spoonie Foodie and she continues to inspire me by being so incredibly brave all the time. As soon as we met it felt like we had been friends for years and we didn’t stop chatting. Although it may be due to different circumstances, we have a number of shared life experiences which I think have helped cement this bond, and that’s probably enough gushing for one post! So on Thursday morning, amidst my stress about the car, anxiety about the physio and general over-emotionalness due to lack of sleep I received one of the most thoughtful texts from Lucy. She offered to drive me up to London to see my Grandmother, and even writing about this act of generosity brings tears to my eyes. I am hoping that I will be able to get the train up there to see her, she’s home from hospital now so I won’t have to navigate central London. I did plan on going up there today but that hasn’t happened so I may have to take Lucy up on the offer. Even if I don't, just that fact that she would even think of offering her time and energy to help me like that is the most amazing feeling. Being a spoonie is hard, I try to stay positive but it’s not always possible. Having friends like Lucy in my life makes it a whole lot easier.

It feels like this is the appropriate time to share this blog with my facebook friends. I don't know why I haven't yet, I guess it feels like something of a confessional as opposed to just an semi-objective food blog like I wrote before, but I'll never be helping to end the stigma of disability and mental health if I hide it all away. It does make me a bit anxious, but I've got to learn to deal with that and push myself or I'll never get to London!

To all the people who have ever offered me a helping hand, a shoulder to cry on or even just a text of support and love, thank you so much. I’ll never be able to describe how much you all mean to me, I hope you know it though. 

Paranoia, steak and limitations

I love this quote by Joseph Heller from Catch 22

I’ve had such a lovely weekend. The weather has been fabulous so I’ve spent much of it just lying on a beanbag in my patio soaking in the sun. I’m low on vitamin D so it’s basically therapy! Anyway, as well as that I went to my friend’s house party on Friday night. It was a group of people the majority of whom I had never met before and as Mr SF was away for the weekend leading a Duke of Edinburgh expedition I was going stag. But I was really determined to get there, I hadn’t seen my friend in months and most of her friends that I have met before have been lovely. So during the week I let her know that I’ve been having some issues with anxiety recently, we arranged for me to go a bit early to meet her house mates and settle in before the crowds arrived. I did, and I’m so pleased. I had a lovely evening, got on really well with everyone I met and even ended up being pretty much the last to leave. Her house mates all insisted I must come back and hang with them again. Fab. And yet, I have spent much of Saturday and Sunday worrying about things that I said. Did I talk too much about being ill? Did I make a fool of myself? I don’t have a bad memory when it comes to drinking so I actually remember the evening pretty clearly and I’m pretty sure I didn’t, but if I did embarrass myself somewhat...so what? What’s the worst that could have happened? I didn’t get asked to leave the party, in fact I was invited back and I was polite and sent a thank you text afterwards. So really, I’m obsessing over nothing! And I do this all the time! It’s so ridiculous I’m practically laughing at myself as I type this post. It feels like this is a very mild form of paranoia, and I often doubt myself that I have behaved ‘normally’, particularly around new people. But is this kind of paranoia actually just anxiety in reverse? Instead of worrying about what might happen, I worry about what has happened. I should point out this isn’t something that happens with my close friends, with them I know that I’ve got a relationship where I could just ask them outright and they’ll be perfectly honest with me (and most of the time laugh at my ridiculousness with me!)

Anyway, despite this worry I have had a wonderful weekend. On Saturday I actually made it out the house to have a wander through Kemptown Carnival despite not getting home until a ridiculous hour after sunrise and I had an amazing steak sandwich from the Beach BBQ people. They cook a whole joint sous vide (meaning under pressure), the meat is vacuum packed and cooked in a temperature controlled water bath at 52 and a half degrees overnight, which ensures a perfect medium rare joint that is meltingly tender. They char-grill the outside, slice it, char it on a grill a second time and serve it in a soft bun with horseradish and mushroom ketchup, parsley porridge and rocket. I’ve got to say, it was delicious! At first I thought the portion size of meat was a little meagre, but I am more than happy to say I was oh so wrong on that front. I’m afraid I didn’t get a photograph because my brain wasn’t working nearly well enough to think about something as sensible as that, but head on over to their twitter feed/website and you’ll see plenty. The flavours all came through just enough to complement the meat and not overpower it (easily done with strong flavours like horseradish). At £7 it wasn’t exactly a cheap eat and is at the very top end of what I deem to be acceptable for street food (I appreciate it does seem like a lot for what is essentially a sandwich) but when you bite into the meat you don’t regret the spending one bit. Plus they are really friendly and will happily give you a free taster of the meat to entice you in. A definite must-try for any steak fan.

Sunday saw more sunbathing and the return of Mr Spoonie Foodie sun burnt, tired and in need of cuddles. I definitely wasn’t complaining.

I didn’t make it up to London last week...I know that a huge part of this is a mental block, but I’m genuinely worried about the physical side of it too. There is a fair bit of walking involved in just getting around the stations and then I’ve got to be compos mentis enough to spend some quality time with my Grandmother. She’s out of HDU now and is meant to be heading home this week, but I know that time is running out. I definitely don’t have the energy to drive myself to North London and I’m not sure that my rickety old banger would actually get there in one piece! I know I have to get there...I just don’t quite know how I’m going to do it. I’ve got my first physiotherapy session on Thursday, hopefully an exercise program can help me gain some strength back and then the physical side of the journey won’t be quite so daunting. There are times where I’ve considered some kind of mobility aid, be it a wheel chair or...well who knows what, but I’m definitely not ready for that. It’s somewhat ironic because a wheelchair would enable Mr SF and me to do so much more stuff together, but I think we both just see the 'disabled-ness' of it (is that irony? I think it is, but I'm never quite sure!) I guess we both like hiding behind the fact that I don’t look any different, it means we don’t have to deal with a lot of the stigma attached to disability.

I think I’m finally going to make the official announcement on Charley’s Little Kitchen website that I am unable to run classes at the moment. I’ve put off doing this for quite a while, but I think it is time. Setting up a business has been an amazing experience. I’ve been able to combine two of my passions in life - cooking and working with children, whilst doing something that I fundamentally believe is essential to the future health of society. Not only that, but I actually made something of a success of it. We have kids that ask their parents to come back to our holiday clubs and parents that have sent the most wonderful feedback. I’ve also got to meet my helper Vicky who is now a true friend and I’ve been able to run stands at the children’s food festival for the last 3 festivals. I’m not giving up on Charley’s Little Kitchen and we are booked to return to the children’s food festival in September, but at the moment I know I don’t have the emotional or physical strength to be running events. As anybody who works with children will know, it is a physically demanding job. I was running workshops from 10 until 3 during the school holidays and even when I was doing ok physically, it would exhaust me for days afterwards. I was also finding the workshops more and more stressful. Although I always felt amazingly proud of myself once the workshops were over, I was putting myself under more and more emotional pressure in the run up to them and this inevitably triggered more physical pain. Obviously I can’t continue to do this to myself when my physical condition has worsened. I have to learn to accept my limitations, one day I’ll work it all out.

There’s a quote by Gunther Von Hagens (he's the guy who preserves bodies in tact and shows them without their skin etc) that I think I’ll leave you with. It really speaks to me...