My Spartacus Story

I wrote this just over a month ago, before I had this blog. I was thinking of writing a blog post about being out of work and realised it might be a good idea to contain a bit of my history within this blog so that future posts have more context, so here is My Spartacus Story that I wrote as part of the campaign against the current changes happening from the Welfare Reform Bill.

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MY SPARTACUS STORY (abridged)

I am writing this now because I have a physical disability and am relying on DLA and soon probably other benefits too as I face the loss of my job. I did however, have experience of the welfare system as a young adult, and so have included my earlier experience of mental health problems. If you wish to skip that part and go directly to my current circumstances, and fears, then go straight to paragraph 6.

As a teenager I suffered from mental health problems. I began self-harming at the age of 11 and by the age of 13 teachers, and subsequently parents, found out. I was seen as an outpatient and given Prozac; this gave me terrible panic attacks. I was admitted to an adolescent psychiatric ward in January 1997 for 2months, where I was put on seroxat, no panic attacks, but first ever suicide attempt followed soon after. I returned to school, but the ridiculing at the hands of others at my difference and unusual absence was too much to bear and I took an overdose not long after being back. Not to mention, the school had not let me be part of normal lessons contrary to what they had promised the hospital at the discharge meeting. After this overdose I was unofficially expelled, just wiped off their records and asked never to step foot on the premises again. The year book produced just under 2years later lists ‘those who left us early’ and includes those expelled for drug dealing, bulling and other atrocities, but none so serious as mental health issues, for which I was inexplicably deleted from the memory of the school.
In October of that year, now 14years old, I was readmitted to the same hospital for a 2week assessment. This two weeks became a year in total. In the February I was detained under the Mental Health Act on a Section3 (6months) due to repeated attempts to take my life. The next October, 1998, I was transferred to a secure unit, where it became apparent that this could easily be my life for the next few years unless I did something about it. I appealed against my section, and won, much to the dismay of the consultant who had said “You definitely won’t get off at this one or the next one, you could win an appeal at the one after that, but I wouldn’t support it” – they were 1year sections by that point too. So he had his idea of my life bagged up, secured up even, having met me for probably less than 3hours in total, for the next 3years. I was still very ill, but not as ill as those who sat alongside me in the smoking room. I had a supportive family, and a place to be looked after by loving parents, which is more than most the other patients had.

I left the secure unit in May 1998, moved back in with my parents, and attended a therapeutic community day centre. After 6months, I moved in to a supported living hostel. Despite all the love and support my parents gave me, I had become institutionalised and used to the structure provided by anonymous staff rather than loving parents. I also wanted to live in the town and not have to do the the 2hours bus journey every day to get to the day centre from my parents village. Hear began my journey with the welfare system. I put in a claim for income support, as I was still attending the therapeutic community daily for 6hours, and so there was no way I could work. As soon as I moved in to the hostel, I put in an application to the council for accommodation as there was a 3year time limit on staying at the hostel so it was standard procedure to apply as soon as you moved in. Due to my mental health history, they put me in a high medical needs band and I got a flat of ‘my own’ within a few short months. By August 2000, a couple of months after turning 18, I had moved out and in to totally independent living. I had expected to be staying in the supported living hostel for at least 2years, so it was a bit of a shock. I was still attending the therapeutic community daily, still self-harming, still suicidal, battling an eating disorder, but doing everything I could to get better and stay out of hospital. I was receiving DLA by this point, it was, if I recall correctly, set at £200 a month & helped me in my move to independence. In Sept 2001 I got a boyfriend, he wanted to move in and as he was working, he couldn’t do this legally with me claiming benefits. So after a while, I ditched everything and got a full time job, at a nursing centre. Having not particularly worked before save for the odd pub shift, I called up the benefits office, proudly declaring my intentions to work and that I no longer needed their help. I lasted 3weeks in the job before meltdown. I went crawling back to the benefits office, admitting defeat, asking for help again but because my boyfriend was living with me, his earnings, of about £10,000  a year, were considered enough for us both to live on. He paid all the bills, rent etc. I lived on my DLA, trying to get over the humiliation and set back I had put myself through of going in to work and failing after such a short time. After a few months, I applied for a part time job, just 2 days a week, I did this for a few months before the job became full time. I was by no means ‘well’ at this point, there were still many incidents of self-harm which remained secret from loved ones and employer alike. Such was my determination to work and be part of what is considered normal and accepted in society, that I managed to carry. Sometime during this period, my DLA was turned down at renewal, I forget why but it was, and that was the end of my journey with the benefit system for some time.

In 2003 I applied for a job working for a large public sector organisation and was lucky enough, somehow, to be successful. During my time working there, my mental health has been far from perfect. Up until 2005, I was still having weekly therapy sessions with my key worker from the day centre. In 2005, this service was shut down due to budget cuts at the Primary Care Trust. A particularly serious attempt on my life followed, leaving me in a coma for several days with the doctors unsure if I would wake up (I had two weeks off work in total).  After that, I could no longer cope with the job I was doing (having been made redundant due to centralisation from the first one) and I put in another claim for DLA, this was awarded for 1year.

Due to being awarded DLA, I could apply for a part time job that came up in a department I had always wanted to work in, it kept me in work and off full benefits, I was still paying all my rent, still paying tax and national insurance, and still had the dignity of being in work. During that year, I really took time for myself, I saw a brilliant psychiatrist who put me on new medications being very forward thinking that he was. Most psychiatrists in adult services see you ever 6months and prescribe medication, but no therapy would be involved. I was lucky enough to get this lovely doctor on his 1year rotation, his special interest by my diagnosis.

Being part time at work meant I could start new medications on the days I wasn’t at work. Take one day a week to have therapy. One of the medications had to be increased every two weeks due to the risk of a fatal rash developing if it was increased too fast. Every time I increased it, I became suicidal, I knew it was down to the medication but it didn’t make it feel any less real at the time. I could time all this to not miss work, and to stay in my part time job, having DLA enabled me to do that. After a year of working and having time to finally stabilise things whilst being largely ‘out of the mental health system’, I was ready to go full time and a position came up so I didn’t attempt to renew the DLA, not feeling I needed it anymore, and along things plodded, in stability and relative happiness. I got a boyfriend (the last relationship ended in 2005) and we were so happy, and in love (and still are). Then there was the fateful summer of 2010.

I woke up on July 9^th 2010, one of the hottest days of that year so far. I got out of bed and the room was spinning, I felt like I’d had about 8pints of cider. I stumbled about, exclaiming to my boyfriend as I staggered about how odd this feeling was. I put it down to the heat, but feeling rather weak, got on a bus instead of cycle, and got the train to London for a hen do. I stayed sober throughout, not drinking much at all, no longer dizzy, but slightly not right still the same. I stayed at my friend’s house in London, waking up to the phenomenon that is double vision, or diplopia as it became on my medical notes, along with the room spinney dizziness that had returned. I kept rubbing my eyes, blinking, assuming this would go away, that I just hadn’t woken up properly yet. I walked about and waited, still no improvement, laid back down, my two friends still fast asleep. Skip forward a few days, couple of GP appointments, and a diagnosis of labyrinthitis, I was told by a GP I needed to get to A&E, I was rather shocked at this suggestion, A&E for an ear infection, surely not?! Anyhow, I managed to get a lift to the hospital and waited together with my boyfriend for hours in the waiting room. Eventually, they started mentioning brain scans, and I started getting scared. All this time, however, I didn’t believe myself. All the years of having mental illness, physical illness was always blamed on stress, or something I’ve done to myself, I didn’t believe there could be anything really wrong with me. It must be all in my head I thought. They did a CT scan, which came back clear, and stuck me on a ward by about 4am, about 15hours since I’d got there. The next days are all a bit of a blur, but the included the starting of going numb down my left side, getting woken by severe stabbing pains in between my shoulder blades, losing  the ability to walk. I had a brain MRI which showed lesions, patches of demyelination. I had no idea what this was, but was told it was a one off, probably as a result of a gastric bug I had picked up when I visited a friend in Ukraine a month before. After a week, I was discharged, using two crutches for short distances and a wheelchair for anything more, which was unavailable on the NHS so I went to the Red Cross who loan them out on a temporary basis. Over the coming weeks, my walking gradually improved, the feeling slowly returned and the pain in the shoulders eased. My walking however did not improve completely, the sensation did not return to normal sensation and the pain did not completely disappear. In September, I returned to my job on reduced hours, where I continued to try and build them up to get back to full time. By early November, I could walk probably over a mile, I was back on my bike, I was going great guns. Still getting tired, still not back to ‘normal’ but so much better. Then suddenly one day, I just couldn’t. I had no idea why, nothing I could put my finger on as such, I just couldn’t walk as far and could no longer balance on the bike. I had a follow up scan and a neurologist appointment on 20^th December, where they confirmed that I had new lesions (oh so that’s what the suddenly being able to do less was) and gave me the diagnosis of Relapse Remitting Multiple Sclerosis, and gave me some steroids for the relapse.

In February 2011, I had another relapse, more steroids. Still not over the first two, but was told that it can take up to 6months for the healing to fully occur, but that after 6months any symptoms are permanent. So that pain between my shoulders that stops me sitting on certain chairs, sitting for too long? Yes, permanent. That seeing double on looking to the left? Yes, permanent. That weird sensation down my left torso where I can’t tell if something is hot or cold and it feels like I’ve been slathered in tiger balm? Yes, permanent. Getting so tired I can’t do anything? Yes, permanent. I was still not able to work full time, and considering my job was meant to be covering a shift pattern and because of budget cuts the office was already running at 25% less than it should be, I was worried I was going to lose my job as it became apparent I wasn’t going to be relieved of the symptoms that were stopping me being there, working full time and working shifts. I was there, but not in my full capacity. I got in touch with a disability charity, who helped me put in a claim for DLA which I was awarded for two years, until February 2013.

After another bout of steroids, and all the fun this brings -side effects include sleeplessness, constipation, bitter taste, feeling like you have a second skin, frequent urination. The side effects are okay though, it’s the withdrawal symptoms where you feel like every joint is sprained, can’t walk, can’t use crutches, just have to stay in bed for 2days until it passes. I started daily injections of Disease Modifying Drugs (DMDs), to try and slow the progression of the M.S. I got horrible site reactions, each one swelling up to the size of the biggest mosquito bites I’ve ever had, itchy like crazy and hard lumps, some of which still remain. The site reactions however, feel like nothing to deal with compared to the possibilities of the alternatives. Basically with DMDs for M.S, you initially have two choices, the Interferon’s or Copaxone. I was directed to the M.S decisions website by the M.S nurse, and my decision was based mainly on what I read on there, and other reputable online sources. Interferon’s, although generally don’t give site reactions, have the common side effect of having flu like symptoms for 24-48hours after injecting. Depending on which interferon you go for, this is anything from one to three times a week. Interferon’s are also not recommended for people with a  history of depression. I was, and still am, trying to desperately cling on to my job, so for the stability that Copaxone felt it could provide by comparison, I decided that daily injections and site reactions were much easier to deal with than flu symptoms and depression.

So on 1^st March 2011, I began Copaxone, full of hope that it would stave off what appeared to be rather regular relapses. In July 2011, another relapse hit, I also got very depressed. Was it a symptom of the relapse, or a natural response to dealing with having been diagnosed with a degenerative illness? Who knows, not me, but it was what it was. I stayed at work, but just felt so bleak. In the September, I had a routine appointment with the MS nurse, who wanted me to see the neurologist as things still hadn’t improved, I informed him of some of my newer, more embarrassing symptoms (let’s just say there were of the bowel) and he confirmed it was a relapse and gave more steroids. Too early to consider Copaxone a treatment failure for him, and too early for me to give up on it given the alternatives, we carried on with it. I have expressed my fears of going on to an interferon to the neurologist and to the MS nurse, that I would lose my job if I had to have more time off to get used to it, and also my fears with depression. The flippant response has always been “oh well, we’d just treat that”. They have no idea that it is not that easy. They say they would monitor me, would they? Of course not. Unless, by monitor, they mean carry on with the 3monthly appointments that I have now, and leave it up to me to call if I feel depressed and if I do refer me to the GP for some jolly old Prozac. Little do they know, I can’t take Prozac, seroxat, citalopram, sertraline, venlafaxine, lofepramine, amitriptyline or anything other tricyclic or SSRI. The only anti-depressant I’ve ever responded to is moclobemide, one of the newer MAOI’s, with which, one can’t take any cold & flu remedies, which if was to be on a drug which makes me feel I have flu 3times a week, ain’t gonna be much fun and ain’t gonna make for staying in a job for very long. All of that aside, the flu, the depression, I could probably cope with if it wasn’t for the fear of losing the job. I could also maybe cope with the depression, if I had some kind of back up or offer of help from the mental health services. Remember those budget cuts I mentioned from 2005? The ripples are still being well and truly felt. After the bout of depression in summer 2011 I asked my GP if there was any chance of getting some Cognitive Behavioural Therapy, as I had responded well to a short course of that as a young teen, and it is recommended for dealing with M.S. She referred me for an assessment, which came up a blank. There is no mental health support for someone who has a history of mental illness and is newly diagnosed with a degenerative illness. I can cope with this, but understand it does make me somewhat nervous to try a drug, or new situations, that might push me to the point of not being able to cope.

Oh, yes, this is probably the point where I should explain a bit about the job situation. After all that timing of the drugs, choosing the DMD partly based on work, taking steroids so the withdrawal symptoms are at the weekend, I am losing my job anyway, due to the centralisation of the office yet again. As well as centralising, meaning a commute that I couldn’t manage, the job itself is changing, meaning shifts I couldn’t manage. Even if I could get there, the setup of the new office will be such that it would be too much back ground noise for my poor concentration levels to cope with. The job itself requires too much cognitive function which I feel I have lost. So my only option is to ask for medical retirement, or redundancy. Obviously redundancy would be a one off payment that might see me through 2months, 3 at a push, and then I’d be stuck. So medical retirement and a pay-out of the pension I’ve been paying in to for the last 8.5 years, seems like the best option, to keep the metaphorical welfare wolf from the door as much as possible.
Once I found all this out, and it became apparent I was losing the only job I’ve ever felt safe working in, ever enjoyed, the environment I’ve known for the majority of my adult life, I was rather stressed, and as much as I tried not to be, I was. Thus, making symptoms worse. This, coupled with the death of a family friend (who sadly lost his battle with his own M.S journey), meant my being signed off for a month over Christmas. I was due to return this Monday, today, but sadly, after toiling away online last Tuesday, reading about the Spartacus report, and trying to do my bit, I’ve had another relapse and am on another course of steroids. This relapse bought fatigue like I’ve never experienced before (able to be awake for about 5hours a day if I did nothing), both legs buckling when I walk, head spinning, nausea.

I am gutted I can’t go back to work; I want to go back not just fade out. The office is moving at the end of April, so I have to be gone by then anyway. I am filled with fear as to what I will do.
It seems the Copaxone is not working, so I need to consider interferon (Oh, did I mention, after interferon’s is another option a monthly infusion, which has the lovely side effect of sudden death), but if I take that, am I going to be able to hold down another job? Is a new employer, if I’m lucky enough to find one willing to take me on,   really going to tolerate the level of sickness that taking an interferon could bring?  So do I push for this change now, & try and be stable by the time I need a new job? Or do I not take the risk of depression in an already stressful time, and ask to jump straight to the one with sudden death as a risk?

At the moment, I am still lucky enough to be being paid full time, however obviously when I lose this job, I will look for a part time job, as I just can’t manage full time. I can’t work enough to support myself, living in the cheapest accommodation I can, a one bed council flat. I am not in a mansion, I am not asking for the world. I am asking to be able to manage my life in the best way I can, taking as little from the state as I can in the process. DLA enables me to do this, without it, I'd be out of work altogether, thus claiming housing benefit, council tax benefit, employment support allowance, not paying income tax and not paying national insurance. Aside from all that nonsensical ridiculousness of it all, I don’t want to be sat around the house all day, my GP doesn’t want me to be sat around the house all day, and this will do no good for my physical or mental health. I NEED DLA to be able to work, to be able to pay income tax, national insurance, council tax and rent. I NEED DLA to have my dignity, health and happiness. I could go in to the ins and outs of what else DLA pays for, but I think that you should be able to imagine that now, with the rather lengthy history I have provided, and after all this isn’t a DLA application, it is a piece of writing from the heart. Needless to say there are many other ways in which DLA helps me, but what can make more sense than being able to stay in work, costing the state less and making a contribution?

I am so scared for my future. To summarise the fears I feel I face are, losing my job in April this year, hopefully getting medical retirement, but this is a whole battle I have still to face. Once I am gone from this job, I will look for part time work; I may or may not find an employer willing to take on a disabled person with an erratic and unpredictable illness. If I am lucky enough to find a new job and get settled, I then have the DLA renewal to face early next year. With PIP being introduced in April 2013, I really can’t imagine a DLA renewal being awarded 2 months before. If this is turned down, how do I live? I will have to quit the job I might have just started settling in to. And when do I fit in the change of medication to all this? The change of medication that isn’t to manage day to day symptoms, but something that needs to be done to try and slow down the progression of this beast that is M.S. Every month this is put off, is potentially a month taken from my future. I am scared, I am scared of M.S, scared of not knowing how long my body will hold out, scared of not knowing with each relapse what symptoms will remain with me forever, scared of depression, scared of feeling suicidal, scared of dying at my own hands, scared of dying of M.S, scared of how this is affecting my loved ones. However more than all of those fears, I am scared of David Cameron and his Welfare Reform Bill and the ability that one small group of people with no experience of life on the bread line, has to make all the things I, and millions of other disabled people and their carers, have to face anyway, so much harder.

None of these things in my life can be helped, they are the hand I was dealt and I don’t proportion any blame or expect special treatment or sympathy because of it.  But I do expect to be able to LIVE, ideally, with some dignity, although in the current climate maybe dignity is just too much to ask, but living? Surely not.

MRI

Thursday I had the MRI scan required to check for new activity and see if I am eligible for Tysabri. I've had a few before, I seemed to have totally forgotten the procedure! I can't even remember if I've had 2 or 3 before, I am pretty sure it is 3 but it could be just 2. Either way, I thought I'd write a quick blog about the experience even if just for me to look back at when the time comes to have another.
I arrived 15minutes early as instructed. The boyfriend had come with me as I was quite nervous and hate sitting in that waiting room on my own reading out of date rubbish magazines. I got called in pretty quickly, so turned to the boyfriend and said I'd be about 20minutes and that he could go for a wander if he wanted. That was my first mistake as of course I was only being called in for the list of questions they ask you before the scan (do you have kidney problems, any operations, metal here there or anywhere etc). Also at this point I had to put all my things in a locker, she said if I was with someone I could leave my bag with them, I looked in to the waiting room but the boyfriend had already gone off for a coffee so in to the locker went my bag. So there I was back in the waiting room, feeling all naked without my handbag. No phone, no cigarettes, no watch and worst of all there is no clock in the waiting room so I had no idea how quickly or slowly time was passing. Luckily the boyfriend came back (no idea after how long due to the lack of time telling objects) to find me still waiting.
Because the appointment was in the middle of the day there was quite a wait, I think before I've been first on the list (I remember arriving before the receptionist once) and so there wasn't a wait. Although I think I'd rather not get up early and wait for a bit. After about 45mins I got called in, I didn't need to get changed in to a gown as it was only brain not brain and spine being scanned.
I had the usual telling off about my piercings - "it's not for our benefit you know, it's for your own benefit as they might hide some of the lesions". The neurologist has said it was fine when I wore them before. I would just take them out but they are ones I can't physically remove myself so it would involve a trip to the piercing shop the day before and potentially letting them close up. I do remember from my first scan (which I had as an inpatient after the unexpected first attack of MS) they were really arsey about the piercings and I remember thinking "I didn't plan to be having MRI scans when I got these piercings, this has come totally out the blue and so please STFU!" I can understand them being a bit off about it on routine appointments though as obviously I could have planned to take them out, but like they say it makes no difference to them.
I hopped up on to the scanner and she put the clamp thing over my face. I never understand why they have a mirror on that thing. I remember once being told it was so I could see out the scanner and not feel so claustrophobic, but every time it's been pointed so all it shows is another part of the machine. So really it doesn't help at all, just makes it all more disorientating.
She then said that she'd be back in 10minutes to out the dye in. I had thought I was having the scan without the dye, because the letter just said 'brain scan' not 'brain scan with gadolinium dye'  as it has before. That threw me a bit because for some reason I've developed a bit of a phobia of needles lately. I used to be fine with them but ever since injecting myself with copaxone, I've been not able to bear anyone else doing it. Also my veins have been hiding a lot and so the experience is never pleasant.
The first 10minutes of scanning went reasonably fast, I tried to do the mindfulness of breathing practice which wasn't easy with the clicking, clunking, beeping and drilling noises the machine makes.
She came in to try and get the dye in, this took painful several attempts, making me worried about having to have someone find a vein on me every month if I do go on Tysabri.
After the dye went it, there was just another 4minutes of scans and it was over.
We left the hospital about 1.5hours after we'd arrived in the end, so not too bad at all.

I feel relieved to have got the scan over with, I don't find the experience horrendous but it isn't exactly a way I would choose to spend an afternoon either. Now just to wait a month for the results and hope that it has found a new lesion or two so that I can have the Tysabri and a reason for how rubbish I feel, but that it doesn't find too many, just one neat little lesion would be nice thanks!

Moving Through The Barrier

After the sunset experience all I seem to want to do is be. I am happy not having any tv or music on. I realised that when I put my iPod in as I walk, or sit and look at a sunset – I thought I was trying to keep my mind busy but actually I was doing the opposite. I was trying to turn off my mind. Trying to do everything to keep my mind from thinking, today I let myself go in to thinking. I didn’t turn to the usual distractions and you know what, it wasn’t so bad at all. Even while I was sitting thereI got to a point where I wanted to put my music back in, I felt I had ‘thought enough’ but I stopped myself and in doing so felt like I went through a barrier that I would usually have put up.

As I came down the hill and out on to the street on the way home, I came face to face with a guy who I had an altercation with a few months ago. I’d come out of yoga and was waiting to cross the road and he asked if I had any spare change. I informed him that my money wasn’t spare and he didn’t take kindly to this, we had a ‘conversation’ which ended in him telling me to ‘go back to my flat and die’. I’ve seen him around a few times begging aggressively since. So as I saw him today I felt the usual response instantly of being nervous, then I thought back to my feeling of collectiveness and no longer felt worried about walking passed him. We are all just part of the same thing in one way or another, all of our uniqueness’s good and bad, make up the rich pattern that is life.

I know this probably all sounds really cheesey , crazy or just down right obvious, but it felt like a poignant experience that I wanted to share.

A Spiritual Sunset

Today was a lovely sunny and warm day. It feels like a welcome change after the recent cold snap. I got up late and went to the mindfulness course. When I came out of the course I was just going to go to Sainsburys for some dinner ingredients, come home and do my usual evening thing (laptop, tv, dinner, music whatever). As I was cycling I found myself wanting to enjoy the outside and what was left of this lovely day. I diverted from the supermarket and went and sat by the river and had a bit of a late lunch. Then I cycled home and decided I would try and walk to the nearby ‘hill’. It’s really just a small mound where there used to be a castle, but for an area that is primarily flat it is a prime position for seeing the City from a height. The flatness of the whole area gives a special kind of view when you do get to a higher point, as far as you can see is flat in every direction, the massive expanse gives a great feeling of openness.

I quickly popped home to leave the bike and get my iPod. I walked to the bottom of the mound (it really doesn’t deserve to be referred to as a hill!) and had to sit down. The sunset looked good from where I was so I was happy with where I had got to be it for a break in the walk or my final destination. After a bit of a sit, I decided to go for it and attempt the mound. I made it to the top, and at that point I was thinking it deserved to be referred to as a mountain! I was quickly drawn to the sunset, a wide array of colours, orange, yellow and gold against a back drop of blues with spattering of grey whispers of cloud over the top.

I initially sat looking whilst listening to music. I then started to feel that I just wanted to be totally there in the experience and so removed the music and took in the scene as it completely was. Along with the gorgeous view there was the birds singing, a couple sat near to me laughing, car horns hooting in the rush hour, people going in and out of the restaurants and pubs below, a dog barking, the wind rushing by.

I decided it might be nice to try a bit of the mindfulness of breathing meditation practice. I looked over at the sunset, moon and clouds and started to become aware of my breathing. I was aware of the couple sat nearby and what I was most aware of was how I did not feel self-conscious. In the past, if I was sat near to two people laughing I would’ve been distracted by it. I would’ve been wondering if they were laughing at me even. Today, I was not thinking any of those things. I had not become comfortable in their presence by ignoring it, or by overthinking it, I was just aware. I then suddenly felt a kind of connection with them. I suddenly realised they feel the same as I do. They have pain, emotional and physical; we all have a human experience of life on the same planet. Of course we all have our own individual experiences within that, but we have that as a shared basis. Although I have always thought about others and always tried to appreciate others feelings and experiences, I’ve never actually felt it – if that makes sense.

I suddenly felt like everything was all a part of itself, all consumed by this common ground we quite literally walk on.

I looked over at the universities and no longer felt anger or jealousy or just the general sense of divide I usually feel being on the ‘town’ side of the age old ‘town and gown’ issue. I felt a part of it in my own way.

I’ve heard the phrase ‘we are as one’ so many times but never really thought about it much before. Today I really felt like I understood not just the meaning but the feeling of being as one.

A visible invisible disability.

A lot of times M.S is referred to as an invisible disability. This is true. But what actually, do we think of when we think of invisible symptoms, suffering or disability? Tiredness, pains, bladder problems? Yes - all of these are key to an invisible disability. However my thinking on this recently, has turned to the more visible signs of an invisible disability.
I walk in to a pub, I don't look disabled. A look like a 30something (no no Mustard, 20something at a push - oh really, don't, but thanks ;p) woman wearing slightly alternative verging on gothic clothing. To anyone that first meets me, there is of course no physical reasoning for my get up. To others that have known me a long time, they might think I am just craving the emo and slightly gothic youth I toyed with as a youngster. For others, it will be another long string of many changes in the life of 'phase girl'. I change my wardrobe about as often as I change my drink - cider in the summer, lager sporadically, whisky most the time, with a splattering of vodka and gin.
Anyhow, MS has changed my appearance. Not in the way that I am in a wheelchair or walking with a stick or wearing an eye patch - although all these things have happened on occassion (see -phase girl strikes again!). But in more subtle ways.
Everyday I wear layers. Layers layers and more layers. I can't risk getting too hot, or too cold. Either of these things are not necessarily dependant on the outside weather. Because of the fickle nature of MS, I could be sitting outdoors in baking summer heat or in a beer garden in the coldest day of the year, and my body temperature won't agree with that of the surroundings. So no matter what time of year it is, I have to layer my clothes. This naturally leads to different clothing choices. Arm sleeves, cardigans, vest tops, under tops, over tops -and obviously every single one must look perfect as an outfit combination.
Continuing on the layer theme, winter wears bring funky things along such as leg warmers, arm warmers, snoods, hats, fingerless gloves - of course all following a purple theme like most of my accessories, but now that there is more of a call for accessories it looks like I've gone purple crazy.
Then there is footwear. No more are heals appropriate. I'd never been a massive heal wearer pre MS, although had been just getting used to them, especially having a boyfriend who was rather partial to heals! Now, not only are heals out the question - the type of unflattering flats I can wear is also limited. I need a cushioned sole, due to pains in the feet, and so purchased a pair of purple doc martens - highlighting the purple crazy and gothness that layers produced.
So, there I am, wearing layers and doc martners, only to find I can no longer wear jeans or pretty much any trousers - due to the site reactions when injecting copaxone. So I find myself giving in to either linen trousers or leggings. Being a bigger girl (again another thing of the MS but that's a whole other rant)- leggings must be worn with a long top. Being someone who now must wear layers, a long top with layers over leggings brings an inevitable gothic style. Add in the purple doc martens and there you have it.
A totally visible invisible disability.

Mustard 1 - Depression 0.

Last week, a cloud of depression hit me out of no where. It didn't last long, only about a day, but it scared the bejeezus out of me. I have been reluctant to write about it on here, so publicly, but I think that by not writing about it, I am coming across a stumbling block and not able to write about anything else. So I thought maybe if I just address it, make a quick post about it, I can put it to bed, move on, and write about happier things.
Everyone that knows me, knows I have a history of depression. Having M.S has had, generally, more of a positive than negative impact on my mental health. Sometimes however, I get thumped in the face with depression to the point where I literally can not move, speak, eat, wash or do anything apart from sit, stare and breathe.
I got hints of its presence on Wednesday evening, I could feel it coming on. Then it seem to pass and I felt so relieved. The dread of feeling depression on the horizon is worse than the dread I experience when I realise I'm having a M.S relapse. Both depression and M.S are uncontrollable beasts, yet depression clouds absolutely everything. It permeates every single aspect of life and self. I can be having a relapse, be in a wheelchair, be seeing double, be in pain - but I can still be happy, I can still enjoy food, I can still enjoy the company of others, laugh, and most of all retain my sense of self. Depression sneaks in and takes away all of those things. All the colour is instantly drained out of everything. Nothing feels right, nothing is interesting, nothing is funny, everything is pointless, everything is nothing when depression comes to visit.
After thinking I had got away with only a fleeting encounter with The Beast, I woke on Thursday to find it had crept in during the night and ruined everything - or so it felt at the time. Nothing had changed, no drama, no upset. It just arrived stealth like and cold and flooded every aspect of my thinking.
It felt like it was drowning the real me. I wanted to scream out for help, but as it got bigger it sunk me more. I felt like I was literally trying to reach out for help but just couldn't. It was stopping me doing anything that the real me wanted to do. Trying to take control and do everything in its power to hurt the me it seemed to be trying to overtake. I felt like a hostage inside my own head. Eventually, I was allowed to cry, but still couldn't verbalise what was going on, just holding on to the boyfriends hand so tight as if clinging on physically would pull me out of the depression or at least stop me sinking even further. It was making me lie to him, making me be deceptive in order to full-fill its own destructive urges. I don't want to call it self destructive as it really didn't feel like myself that was wanting to do the destruction. So strong is the sense that it is an invasion, something that was happening totally out of my own control. I do know it was all me, that depression is a part of me, it is all coming from my own brain, I'm not being totally psychotic about it or anything. I am just trying to get across how it feels at the time.
I guess in the past, the real me wouldn't have been separated from the depression for long enough to build up the strength to resist the destructive urges. I would've given in and self harmed. I didn't do that, I am glad I didn't do that. Although I did relent to it and cancel the mindfulness course. As I wrote the text saying I couldn't make it, I was trying to stop myself, each word was a wrench, I paused as I pressed send trying to stop myself doing it, but I just couldn't. I knew it would hurt me by not going, I knew I would regret it, I knew I'd feel better if I went. But because I knew this, so did the depression because of course it is privy to the same information in my brain as I am, nothing is private or safe from it. It really did feel like I was being forced to do something I didn't want to do. I know it was me doing it, but that is not how it felt at the time.

Anyhow, eventually I did get some words out beyond 'I need help' and managed to vaguely verbalise the fear to the boyfriend, who took the night off work and we cuddled on the sofa and I didn't feel alone with the depression any more. By telling him, the balance of power swung back in my favour and the depression started to recede.

I don't want to go back and read this for errors because if I do I'll probably chicken out of posting it, and I think I do need to post it. After all, there is no shame in depression.

A Mindful Body Scan

When I went to the Mindfulness course last Thursday, we were given a CD of a body scan to do at home. It had a short body scan and a long one. I'd done the short one on Sunday and it didn't really do a lot for me to be honest, mostly, I think, because I didn't like the guys voice, and you could hear him really breathing and moving saliva in his mouth - it was all a bit creepy.
Today, I decided I'd better check out the long body scan as this one is with a woman's voice so I hoped she'd be less weird sounding. I think for something like that you need a very neutral voice. 

I'd been having a bit of a bad day MS wise before I started it. Pretty tired, a bit dizzy, the same patch of headache that has been present on and off for the last few weeks, nerve pain between my shoulders rather bothersome and it spreading in to a burning sensation across my torso. I'd not got dressed all day, not showered, just hadn't felt the inclination to do so. I'd promised the boyfriend a cooked dinner and I was wondering how I'd manage to get it done. I'd got to the point in the day where I'd usually just give in and have a nap, probably for a couple hours and wake up only feeling marginally better. 

Do the body scan instead I thought, if only for the rest. I expected to fall asleep and at best it'd be a break from how I was feeling. Well, it certainly worked a lot better than I was ever imagining it could. The woman's voice was much better, not intrusive at all. I didn't fall asleep but I did go in to a very deeply relaxed state. At the end, I couldn't believe I'd been there for 45minutes. I got up feeling much better within myself, the burning sensation was no longer there and the shoulder pain was unrecognisable from its previous form. I slowly got myself up, following the instructions not to rush it. I immediately felt inclined to have a shower, get dressed and cook dinner. After 20minutes or so I noticed the headache had also gone. 

As I only started on the Mindfulness course a few days ago, I still haven't got to grips with the whole idea of it. I was finding it difficult to focus on each area of the body during the body scan. I am usually trying to do whatever I can to distract myself from various pains and weird sensations, so to go through the entire body focussing on each part seemed like a bit of an alien concept to me. I was starting to wonder how it could work, surely not focussing on pain is the best way to deal with it? But in this longer body scan session, it was explained that you are not only focussing on the different sensations in each part of the body, but realising that how they change. Not thinking of the body as a solid state but more fluid and ever changing. This, to me, does make sense as a good way to deal with pain.

I don't know what it was that helped me, it could have been simply laying in a darkened room for that time would've had the same affect although I am doubtful of that as it never has in the past. Whatever it was, I'll take it and I'll certainly be doing more of it!

Admitting the Fear

It is often said that receiving a diagnosis of something like MS is like a grieving process. Grieving for the life once lived, for the things you can no longer do. I always try my best to have a positive outlook on having MS, always try and look for the silver lining. I sometimes find myself rephrasing things I've written because they sound a bit too negative. I don't want to bring anyone else, or myself, down. A lot of people I see online (and the few I know in real life) try and keep the same positivity, and I do find myself avoiding those who tend to always focus on the bad aspects of this illness.
However, lets face it, there ARE bad aspects of it and some days I find it difficult to see past them. The positivity is not so much a mask because that would insinuate it isn't real, it is more of a genuine outer shell that is the one most of us choose to show the most. Under that outer shell however is a plethora of fear.
There, I said it, I am scared. Terrified in fact. I have a constant running of thoughts going around underneath that positive outer crust, terrified of the future and of my own body. Try as I might to put these thoughts away, push them out, shut them in a mental box, go to my 'happy place' - they still persist. Every now and then they hit me so hard it feels very much like jumping in to a pool of freezing water, that moment that you plunge yourself in and feel how cold it is, that involuntary sharp intake of breath and the all over rush that follows. This can happen at the most unexpected of moments, I can think I am distracted, not actively thinking about things and suddenly a wave of total terror washes over me and I am frozen to the spot.
In my experience of grieving at the loss of a loved one, it is quite usual to feel overwhelmed by sadness; fear; anger and denial. These are all things I have felt in relation to M.S. While I often hear (within the positive circles I choose to mix) M.S likened to the grieving process, the conversation tends to stop there. Lets speak out about the actual feelings that it can bring. Lets accept that it is okay to express not only the positives but some negatives too. Don't get me wrong, I am not going to start lamenting about my symptoms and daily struggles in a non-constructive way, but I think sometimes it is all too easy to feel the fear and feel alone with that, when lets face it we are not alone with it. Lets not be scared about frightening others by expressing our own fears!
I think only by accepting and talking about the bad feelings can we learn to live with them.

I am scared, and that is okay.

A Day In The Snow

As expected and along with most of the country, woke up this morning to a rather deep covering of snow. It looked like good snow, the kind of snow you can really build things with. It also looked pretty slushy and unfrozen on the pavements. I figured I would attempt to take a walk in it as I don't think I've really walked a lot in snow since having M.S. I didn't expect to make it very far at all, it would be more effort I thought, that normal walking and so expected to not make it as far as I did the other day during the Bus Shenanigans. I was quite surprised though, it was relatively easy to walk on, in fact it didn't really feel much different to how I normally walk. Or rather, how I normally feel like it'd be best for me to walk, but don't because I'd look a bit odd. Arms out to the side, a slight swagger, very slowly. Today, everyone was walking that way! So I actually made it further than expected, which was very good and very satisfying. Had a bit of a snowball fight with the boyfriend, in which he did have an rather unfair advantage in that I can't run away and also throw like a classic girl. I still got a couple good hits in though and he ended up with more snow down his neck than I did, I class that as a win. 

As we were nearly home, I got a real urge to lay down in the snow. This could be to do with the fact I'd had enough of walking by then and my legs were struggling, or because I was getting too hot under all my layers. However I think it is more to do with just a childlike urge to lay down in the expanse of virgin snow, and the thought that kept running round my head as I was walking that I didn't know if I'd get to do that again. Snow this deep is pretty rare in England anyway, so who knows what state this body will be in by the time it happens again. I kept trying to keep that thought at bay as it was rather depressing, but also tried to use it to make the very most of our walk. 

Tysabri - hope or fear?

I’ve been on Copaxone now for 11months, and in that time have had at least 2, if not 3, relapses – the same rate as I was having them pre-Copaxone. After pointing this out to the M.S nurse a couple of weeks ago, she said I needed to see the neurologist and booked me the appointment, which wasr yesterday. The M.S nurse had warned me that it would be likely that the next step to be considered would be Tysabri, or Natalizumab as it is also known. I had the usual neurological examinations which are becoming all too familiar now. Hop on one leg, walk in a straight line, touch my finger then your nose – I often wonder if it’s the same test used by the police to see if drivers are inebriated. I hope not because if I had that test they’d probably decide I was off my face. It annoys me how the neurologists never seem to comment on the results of these various tests. I had particularly wanted to know if my reflexes had ever come back after I lost the leg ones during my first relapse. Someone did point out to me that I could just ask for his findings, so this time I did ask how my reflexes were. He said “a bit frisky but not too bad at all”, so I’m still not really clear as I am not sure that one’s reflexes being frisky is a proper medical term!

Anyhow, once I was sat back on the chair, shoes and socks safely back on my feet, he got straight on to the business of discussing Tysabri. In order to be eligible for it, I need to have had two disabling relapses in one year that can also be seen on MRI scans. So I am having another MRI to check if it shows new activity since the last one. He explained that as long as it shows some changes I would be eligible, the lesions don’t have to be actually active at the time of the scan. So in an odd way I am now hoping for activity on the scan to show. It does seem a bit arse about face to be hoping for new damage to my myelin, but that’s the way it goes I guess. It’s funny, even after being told by the neurologist that my M.S does appear to be starting off aggressive, I still feel like I am making it all up. Part of me is still convinced none of it is real and they will do the scan and it will show nothing and everyone will doubt me and think it’s all in my head. I feel like I’ve suddenly been planted back in to limboland and a lot of what I am feeling is very similar to how I felt in the 6months following a diagnosis of Clinically Isolated Syndrome and waiting to be diagnosed with full M.S.

The discussion with the neurologist about Tysabri also meant the inevitable discussion about PML. That big grey blob looming on the horizon of hope that is Tysabri. I was given some information from the hospital about Tysabri, so instead of trying to explain PML in my own words, I shall refer to the leaflet.

“Progressive multifocal luekencephalopahty (PML) is a rare side effect of Tysabri. It is a rare brain infection caused by the JC virus. PML causes damage to the myelin sheath around the nerves in the central nervous system. It is an aggressive condition for which there is no treatment. PML is not always fatal, but can lead to death in as little as 6months.

The JC virus is commonly found in the general population and usually causes no symptoms or harm. However, if the immune system is weakened or changed with medication, the virus can lead to PML. We will take a blood test to find out if you have been exposed to the JC virus as this will indicate if you are at a lower or higher risk of developing PML.

If you have NOT been exposed to the JC virus, the risk is extremely low. There is only a theoretical risk of developing PML of 1 in 5000, based on the possibility of new infection in the future. About 2% of the general population are infected by the JC virus per year.

If you HAVE been exposed to the JC virus, the risk of developing PML is 1 in 2500 in the first 2 years of treatment. In the third year of treatment the risk increases to nearer 1 in 400. In the years after this, the risk may go down again but this will become clearer in the future”

I remember when I first got diagnosed and was reading up about Disease Modifying Drugs, I read about Tysabri and the PML risk and I remember thinking that I’d never want to take Tysabri. I never felt it would be worth that risk. I also remembering thinking “I never want to be in the position where I am offered Tysabri”. Now, I am in that position and my thinking has totally changed. I don’t see it as a choice at all, the risk of PML suddenly seems much smaller and all I can think about is getting on the drug and the possibility of actually going longer than 5months without relapsing. The thought that things could actually get better. That I could actually have more of a life, go for walks, and hold down a job. All of these are things that I can see losing all too soon if I don’t take Tysabri, and if I do, I have some hope for the future.

I have decided to stop the Copaxone straight away. The neurologist said he would rather I was on something but he could understand if I wanted to stop it as it doesn’t appear to be doing anything. I was finding it harder and harder to inject myself every day since this last relapse. It’s funny how your motivation can change so quickly. It’s like my total turn around on Tysabri. When I started the Copaxone I was so strict with it, setting my alarm to do it at the same time each day with not a jot of resentment, because the hope was, it was doing some good. Now that I feel like it is doing sweet f.a, the thought of doing it each morning is horrible. I am not usually squeamish with needles and have had no problems injecting for the first 10months or so, but as soon as I decided it wasn’t working, just the actual physical act of puncturing the skin with the needle was so hard to bring myself to do – and coming from an ex self-harmer, that is saying something! It was so nice this morning to get up, take only one tablet, have a coffee and not worry at all about finding a space amongst all the lumps to inject myself. I suddenly want everything Copaxone related gone, I want the syringes out my fridge and sharps bins out of sight.

My other reason for wanting to stop the Copaxone is what if it actually IS doing something? Okay I am still relapsing at the same rate as before I was on it, but what if I would’ve been relapsing even faster without it? As I’ve just had a relapse, I’m kind of breathing a sigh of relief and feeling a bit like I am in the clear for a few months. I know M.S doesn’t work like that, but it is too easy to see it that way. I think it is only natural for the mind to try and find an order and reason for something that is just so unreasonable and unpredictable.  M.S is, by nature, totally irrational but in order to cope with it, I find myself constantly trying to rationalise its behaviour and make sense of it all. Anyhow, I digress; my point was that if I stop the Copaxone now I will have a break without taking anything before [hopefully] starting the Tysabri. If I suddenly start relapsing at a quicker rate, it will suggest that perhaps the Copaxone WAS doing something. It then means I could hold Copaxone in higher esteem and it would be there as another option and hope if for any reason I can’t go on Tysabri or if I do and it doesn’t work. As much as Tysabri is a glimmer of hope it is also a shade of fear. It is pretty much the end of the line with DMDs as they currently stand. If it doesn’t work, what next? That is one of my biggest fears, probably bigger than the PML fear. I really don’t want to be in that position. So by stopping Copaxone now, one of two things can happen. I won’t relapse any quicker thus confirming Copaxone wasn’t working and Tysabri is the right decision and I will get a couple months off from taking it. Or, I will relapse again thus suggesting that Copaxone was doing something, and I’ll still be able to keep it as a possibility in reserve for the future, lessening the fear of if Tysabri doesn’t work. A win win situation right?!

So now, here I sit feeling rather like I’m on a similar track of where this roller coster ride began. Waiting for an MRI, waiting for the results, wondering if the scan will show anything or if it is all ‘me making a fuss’. As is all too common a feeling with M.S, waiting to see what will happen next.

Today I Was Mindful.

Mindfulness is something I've been vaguely aware of for some time. I've known people that have used it and found it helpful, I've had a book about it waiting to be read on my bookshelf for a few years. It was previously recommended to me for helping with depression. I never looked in to it further and my awareness remained vague. Since I've had M.S, it has been a term I've heard more and more and I've heard more and more positive stories from people who have used it. Last summer, I picked up a leaflet in a local pub advertising courses run at the local Buddhist Centre, in there they had a course on Mindfulness for dealing with pain and chronic illness. I toyed with the idea at the time, but the idea never quite grew in to action. 

A couple of weeks ago, I met a friend for lunch in the same pub and they had a new leaflet from the Buddhist Centre. I picked it up, stuffed it in my bag and forgot about it until the next morning when I came across it. I noticed the same course was running starting the next week, so without giving myself time to think and worry about it and talk myself out of it, I picked up the phone and booked it right away. 

The first session was today, and I have to say I am feeling very positive about it. The course is 8weeks, 2.5hours a week and one full day. This course in particular is based on the Breathworks approach and I think it is something that has real potential to help me. Today we covered primary and secondary suffering. The primary being the pain you feel in the body at that time, and the secondary being the resulting thoughts from it. The aim of the course is to accept the primary pain. I was pleased to hear that was the case and that there are no grand claims to be able to make the primary pain vanish. The aim is to change the way we deal with the secondary pain. For example, today I am still in a lot of pain in my legs from the walking involved in the Bus Shenanigans. The pain itself is the primary suffering. The secondary suffering (I don't like the word 'suffering' I might change it) in this case, is a mixture of feelings. I feel proud that I walked so far (hence why I don't like using the word 'suffering' as one umbrella), and yet now I am in pain I am frustrated that just a relatively short distance has had such strong ramifications and I am annoyed the pain is there and wondering how long it is going to stay.
So in that case, with using mindfulness I am hoping to change the way I deal with the 'secondary impact' ('impact' does that work more than 'suffering'? I'm not sure, but I'll go with it for now). 

We also did some breathing exercises and a 'body scan', I found it very difficult to keep my mind in the present, but I am hoping that will come with time and practise. It looks like I certainly shall be practising a lot, we have homework to do, not something I have ever been any good at since I left school. I am however going to give this course my all because I really want to give it the best chance I can.

 Although I don't want to have too many expectations, we wrote down our own personal aims for the course and what we each were hoping to get out of it. I shall share my course aims here and then in 8weeks time, I can look back and see how close I've come to achieving them. 

• To deal better with pain.
• To not worry so much about the future
• To enjoy each moment for what it is and not be caught up in the past or present.
• Be more accepting of self.

 I am normally quite sceptical, or rather cynical actually, but I do try and keep an open mind on things. I am very sceptical of anything that claims to be a miracle cure so I am very happy that this isn't the claim here. This is something that claims no miracles but instead, only to change the way we think in order to get the best out of ourselves and our situations. Although I do actually think that the power of positive thought really is quite miraculous in itself at times. So, from this first session, I have not come away sceptical or cynical, more tentatively hopeful. I am certainly going to give it a good old go, after all, I've paid for it now.

Bus Shenanigans.

Since I moved here in April, I've only got on a bus once. Where I used to live, was a couple miles out of town so there was just the one bus and so (supposedly) a timetable it ran to, and a bus stop with a seat. Now, I live pretty much in town, but obviously I still need to travel to other parts of it. There is a bus stop a short walk from here, but it has no seats and because I am in town, it is just a generic bus stop where most buses pass on their way to the bus station, therefore it is difficult to find out which bus is going by when, and when you want to get to a specific part of town, you need a specific bus. 
Usually, with the lack of seat and confusion over what bus may or may not turn up at some point, I've just not bothered with it. 

Yesterday, the boyfriend had driven to work at the pub, where a friend was also having birthday drinks. I didn't want to cycle and then be tempted to get a lift home with the boyfriend leaving my bike behind. Plus, it was bloody cold and I don't work too well in the cold these days making cycling in it difficult. So I decided to put my worries to one side and get the bus. 

I had gone for a walk during the day, with the aim of getting some lunch. I hadn't walked further than the aforementioned bus stop since this recent relapse and so I thought I needed to start testing my abilities again (I feel I'm always testing them, getting them up to strength and then being knocked back down before I've had chance to use them and then having to relearn my new ability levels, but that's separate issue!) especially before seeing the neuro on Friday. The walk went well and I ended up going probably double the distance as well as walking round a few shops. 

So with my new found walking confidence, I looked up the bus times and saw that the bus I needed was going to get to the bus station at 9pm, the stop I use is a few minutes away so I figured ten minutes before would be fine. So chilled out was I, that I wasn't worrying about what would happen if I missed the bus. I could walk to the bus station I thought, there'll be loads of buses there. If not, I could get a taxi. Off I set, ipod in ears and a swing in my step. Arrive at bus stop (the one without a seat) to discover the nice new electronic sign informing me the next bus I required was in 28minutes. 
Stand for 28minutes or walk for 10minutes? No contest. The bus station was probably about the same again as I had walked earlier in the day with ease, so no problem I thought. A few metres after I passed where I'd made it earlier, I needed to sit down. Rolled a cigarette, texted the boyfriend and up I got, still confident and relaxed. 
As soon a I set off again I got a weird pain in my left foot, like cramp but it only hurt when I was actually walking. My right leg quickly followed, maybe it felt left out at the attention my mind was giving to my left foot, or maybe it was tired from overcompensating and thought the left should start pulling its weight a bit more. Either way, it decided it no longer wanted to be doing what I told it to do. 
I made it to the bus station, passing the taxi rank with a large queue of taxis just begging to be used. No no I thought, you can make this Mustard, get round that corner only a few more metres. In my minds eye I would round the corner and find an array of buses for my choosing. 
When I got there, I saw no buses, just signs on all the stops saying 'stop suspended, see sign' what sign? You're a sign, tell me the information, not direct me to another sign that clearly is not there. 
So I sat down in the stop, people looking at me as if to say "doesn't she realise there are no buses from here, is she thick or something?" 
With my right leg and left foot still having some weird power struggle, it was clear there was no way I'd make it walking all the way, with at least triple the distance again ahead. I took a deep breath and headed back the way I'd come to the taxi rank. I could see them, I could see the big queue, but what a distance it seemed. All of a sudden my superwoman feeling had receded. Walking along the queue of about 10 taxis seemed like the biggest mission of all. 

However, I achieved that mission and I got in the taxi and I went to the pub. My left foot still hurts a lot today but my right leg has decided it will be sympathetic and help out, so I can limp about with as much ease as one ever can. 

I could look at this situation two ways: I could beat myself up for not making it the whole way, I could lament about having missed the first bus, the lack of buses and appropriate sign-age, I could be miserable that I have to stay in today as I'm too tired and sore to make it out the front door. OR, I can be proud of myself for walking as far as I did, for putting my worries to one side, for making it to the pub and be happy to chill out for a day around the house. 
Right now, I choose the latter. 

(my 'S' key is sticking, which when writing a post primarily about buses, is not helpful!)