#SpoonieRunning - A Journey From Couch to 5k: Week 8

Monday 14 April the start of a new week and picking up the challenge.

I really wasn't feeling that great last week and was wondering if I should just stop altogether, but I am stubborn and I want to finish the plan even if I cant keep it up.

I woke up on early on Monday morning and felt good, like I was getting back my natural rhythm but even so I had to talk myself into getting out of bed and out for a run.

I had got my running stuff set aside the night before so it was my plan. In my head I thought that I would start back on Week 4 of the plan and I think that was a huge part of my stumbling block. I felt like I was stuck there and I just couldn't face the thought of doing Week 4 again.

To progress each week you need to have completed each week of the plan, that means going out and doing that weeks run 3 times. Technically I had done Week 4 (ok so it was spread over 3 weeks and the last run wasn't completely finished), but I decided if starting on Week 5 of the plan was what was going to get me out then that's what it had to be. I knew that I needed to try and that I could go back if I needed.

So Week 8 of my journey and the start of Week 5 of the plan (yes I know its a little confusing).
Week 5 is split into three different runs

Run 1 (Monday) - 5 minutes running, 3 minutes walking, 5 minutes running, 3 minutes walking and the final 5 minutes running (warm and cool down are 5 minutes of walking)

I survived. I found it easy. In fact I found the walking intervals too long.

Ferd keeps my company during my runs

What was more amazing was that I only needed to have one knee tapped up, so its working its helping to build back muscle tone.

Yay go me and my body.

I even treated myself to some new running leggings - a bargain from Lidl in the reduced section, the last pair and under £5

Well I had to try them 

But then came the Fall....

I had to retreat back to bed as I could not longer stand up and could only manage minimal use of my brain. It left me reduced to tears and feeling like a failure.

I was finding it hard to reconcile the two halves of me - the disabled sick me and the disabled fighting me and I wondered if I had already reached and past my breaking point.

I am the paradox by this point my stamina and general wellness should have been increased but as I have said I have M.E and while yes my stamina in terms of how far I can go has increased I was wondering if my general wellness was actually decreasing and if I would be able to go out again.

But through the support of friends and my husband I realised I have had this horrible disease and battling it for over 14 years - wow that's a long time - and I am not done fighting yet.

Run 2 (Wednesday) - 8 minutes running, 5 minutes walking and 8 minutes walking (warm up and cool down 5 minute walks)

So yes I did mange to get out again. I had a rest day as part of the program and I got my running kit laid out ready the night before and just decided to see how I would feel in the morning.

Queue really rough night. Sleep disturbance comes with M.E. At around 6.30 am I decided that sleep would be the best option and another rest day.

But....
I woke up at 8.30 and decided why not give it ago. The dog needed his walk anyway and I figured if it was too much then I could abandon the attempt and enjoy a nice walk.

I did it, I managed. The first run was ok and hello 8 minutes :) but the second run I really felt those last few minutes halfway through it really felt like I had hit treacle but I slowed down and kept going.

As with Run 1 of this week it resulted with me back in bed, I was simply unable to support myself upright and the following day again retreated back to bed only a few hours after getting up.

Run 3 (Friday) - the big one 20 minutes running (warm up and cool down 5 minute walks)

I debated about having another rest day before attempting this run, I thought about repeating Run 2. But then I decided to go for it and see what I could do.

I thought that I was going to have to abandon the attempt early on my knee was giving me some issues but it soon settled down.

So 20 whole minues of running eep.
5 mintes woohoo but I totally knew that I could do that
10 minutes yay
15 minutes I'm running
Then I get told only 2 minutes to go and that's when I hit my wall, but you know what I did keep going.

Big, big grin on my face - take that M.E, wonky joints and chronic back pain.

umm yeah I lost an ear gel

The rest of the week was spent basking in the glow of my achievement and largely in bed. But I did it, I can't believe how far I've come.

Please note:
I don't want people to read this and get the wrong idea and think ME is made better through exercise. It isn't. I know my body, I know when and where I can push or try to push my limits. I know that I have had periods when this would have been lunacy and would have made me worse and jeopardised my future.

Please don't use my experience to try and push someone who it isn't right for or they are not ready as it could further damage their health.

For people with chronic illness/disability exercise and making a positive change doesn't have to mean getting all sweaty there are many simple stretches that you can do in a chair and some that can even be adapted to do in bed (search chair exercises for limited mobility), but again I urge caution it is not right for everyone. If you or someone you care for do decide that you/they want to try and increase fitness my advice is always to consult with your doctor first.

Previous posts:
#SpoonieRunning - A Journey from Couch to 5k
#SpoonieRunning - A Journey From Couch to 5k: The Journey So Far...

Changes

You night have noticed that I haven't been here for a year. Last year was very hard for me and culminated with me losing my job at the beginning of this year. I wont go into all the details but I have historically written about my struggles with my desk job and chronic illness. But I will say it was a toxic situation that was making more poorly. 

So what now?

I am job hunting and times are a little uncertain (food to buy, mortgage to pay etc)

But I am also using the time productively. As my health is improving I am doing more to get fit and doing all I can to keep moving and better manage my complex range of health issues. I am also teaching myself how to make clothes and getting a better focus on my business and will be launching new things this year. I am trying to spend time each week de-cluttering and sorting through things. 

Moving forwards...

I am going to blog my journey and the life stuff is going to be a bit more of the focus.

Lifestyle, being a spoonie (living with chronic illness) and there maybe a review or two along the way - things I've tried, products I use, I have also become a Bzz Agent so there may also be the occasional Bzz. 

But most importantly it will all be my own views, my own struggles and (hopefully) triumphs. 

Long Time No Blog

So I mentioned that I was getting overwhelmed and then I sort of stopped blogging.


I needed a time out I was putting too much pressure on my self to get my Photo A Day photos up along with everything else.


How am I feeling now?


Well I can honestly say that I am getting there, a few little glitches and I am sure that there will be a few more glitches along the way.


I have now completed a Stress Control Course that was useful - sometimes its a case of reaffirming what you know. I have all of the course handouts and will be reviewing. I think the biggest break through for me was the realisation that if I am still struggling then I will be able to go for one on one therapy - something that I have always shied away from and would not have done in the past. I will get a call in a few weeks to see how I am going and I get to ask for another assessment if I feel I need it. I also get the back up of being able to call them to get referred back into the service any time that I want (but there are still those pesky waiting lists).

I am working towards getting back to the desk job and well we will see how that goes - I think I have learnt that I perhaps need to be a bit more honest about being sick (disabled) to myself and everybody. I may be a SuperMouse but I have come to realise that just because I could do something a couple of years ago doesn't mean that I can do it now. My body took quite a knock and I think I didn't really want to admit it. I think I forgot and just assumed that I could keep going and everything would work itself out and I would be back to where I was before. It doesn't work like that. I needed rest. I needed to give myself permission to heal.


By heal I don't mean that I am magically better.


I needed to re-establish that balance and work out where my base line levels are now (still a work in progress) and remember to take breaks and not feel like a failure for having to take time out.


I did continue to take photos - Yay


But I did miss the odd day here and there and you know what I dont care, I missed a few days here and there at the start of the challenge because the move and well I am going to continue and get a full 365 photos up.


When I started the challenge I thought - easy - but you know what it is actually harder than it seems especially when you take the majority of your photos on a camera rather than a phone and then I joined another photo a day thing over on Blipfoto (I do like to make things complicated).


But I do enjoy wandering around with my camera and I realise that I am starting to ramble now - lol.


So anyway getting to the point - I have taken photos and I am going to do a few Photo A Day catch up posts over the next few days and then I hope that you will join me for the journey to the end of the challenge and maybe we can think up a new challenge for when this one is over :)


And a huge thank you to everyone who has commented and given support and advice over the last 6 months - I really dont think I would have gotten as far as I have done without the encouragement, virtual hand holding and advice. 

Overwhelmed

You may have noticed that there is no photo a day post for yesterday. Well there is a photo but it has yet to be posted - I will be taking a photo each day but I wont post them until the weekend.


As to why - well the title of this post will give you an insight.


As you know I am currently signed off sick from the desk job. 


I have some meetings coming come with some services that will help and support me in talking to work and make sure that both parties interests are protected and well basically so I am not alone a tiny Mouse against a BIG mean thing. 


I also recently rejoined the ME Association and have spent time re-learning about ME.


I set myself the task of learning and putting together information to help with my case - but then I sort of hit a big wall.


I have been finding 'doing' difficult. I get side tracked by things or so focused on something that I dont do other things - which in turn makes them even bigger jobs - which in turn adds to my feelings of being overwhelmed. 


And the days are just speeding by with me always seeming to run behind. 


I need to write to work to let them know what's happening - but then a letter turned up - I opened it so that was an improvement but then I hit that wall and its taken me a few more days to work up to writing that letter. 


Now I had taken control and asked for NO emails, but guess what? Yep an email. I havent even been able to read it. My anxiety levels are getting out of control. I know what I need to do but I cant. 


I fear another letter turned up today - I dont really know. I cant face it my heart is hammering in my chest I fear a heart attack. 


All of that has meant that the letter I was going to write and get in the post on Monday is still yet to be written.


And so I continue to hide and obsess over things.


I am obsessing over the thing that I can control - Mouse. But even with that I am a little overwhelmed - I want to have everything done now, right this minute. I want things to come together at a snap of my fingers. I find that my time is consumed and there is little or no time to do anything else


I need to break it all down into little chunks, manageable bits for each day - I need to write a list and stick to it.


I am making myself decline again I can see that. I have decided that I cant return to working full time - I have realised that I have not given myself time to heal after a horrendous few years which has included some very nasty infections where I realise with hindsight that I returned to work far too soon (but then its hard to say yep I really need at least 3 months to get over that chest infection).


So bite sized chunks and a daily to do list that doesnt overwhelm me and where I can feel a sense of achievement each day.


I may be disabled, I may have a chronic illness, complex medical issues, but I am one of the lucky ones I am able to get about I am able to work (with support, understanding and flexibility) so why do I feel like I am being thrown on the scrap heap?

Anxiety the story continues...

So I thought that I would write a little update.

Everyone on Twitter have been great and a real source of help - even holding (in a virtual way) my hand as I go to appointments/have to read emails/open letters.

So I had my assessment appointment with the counselling service a couple of weeks ago and it was good. Really helpful if a little 'I am not really sure what I am doing here as I feel a bit more on an even keel' kind of way. It was an assessment appointment so no counselling, but the appointment was with a counsellor. He asked me a bit about myself and what I'd been feeling and how long I have had these problems. He said that it sounds like I normally deal very well with my depression and anxiety. Depression and anxiety are not new to me and he wanted to know how he could help. I asked to learn some skills to help me deal with it better as although I normally cope I feel that maybe some of my coping mechanisms aren't always the best (I do tend to hide and avoid things).

Along with the normally coping well he identified that current problem is occupational anxiety and that I have lost a source of encouragement and the person that I would normally talk to. I know that some people still believe that my issues are unresolved bereavement and I feel like I am going blue in the face saying its not - well for once I didn't get that, it was like a breath of fresh air. It was so nice to be told that I was doing well but obviously there are areas that I need a little help. He felt that I would benefit more from learning skills to deal with anxiety rather than one to one counselling. As I am pretty terrified of one to one counselling and dont think that I am the sort of person that would really benefit from it (its not right for everyone) and I like learning I was glad to be offered the opportunity to go to what I am calling anxiety school and I will draw comfort from a group environment knowing that we are all there for similar sort of things. So I am waiting for that referral.

Its not the easy the option - yes as I have said I will draw comfort from the group environment but I will also have to summon up a huge amount of courage to walk through those doors for the first time (and every time after that). But that's not me discharged - the tutors will continue to assess me and if they feel that treatment needs to be changed, more focused or the feared one to one then this can all still happen.

Now I was feeling better after this. More positive. More like what am I doing, pull yourself together be brave you can go to work. Well the day loomed and I just got worse the fear eating me inside I was not ready. I thought I would be so I had not made a return appointment to get the medical note reviewed. It ran out so an appointment had to be made - pot luck.

I saw a different doctor and well he made me feel worse. I got asked how long have I been off now - well I am not entirely sure time is a bit of a blur. But then I got told that the longer I leave it the harder it would be. Well yes I know this - You may be surprised to know I am actually intelligent are you even old enough to be a doctor . But its not that easy. If it was do you really think I would be crying my eyes out in a wild panic with my heart thumping out of my chest? Ok so I didn't say that to him I just weakly said that I know it will be harder the longer I leave it.

I am trying, I am getting help - why would I be waiting for anxiety school if I wasn't trying. Why would I be pushing myself to go out and do 'normal' things if I wasn't trying. I could just sit on my arse and do nothing.

And so the cycle starts again. I was starting to feel a bit more 'yeah I can do this'. But then I got an email (followed by a letter - just in case one anxiety attack wasn't enough) work have referred me to an occupational health assessment doctor (I know that this is part of the 'procedure' and that it was probably coming but would have been nice to have had an email to say that an appointment was being made before the appointment came through - I know you can't win with me communication makes me panic and yet well targeted communication can be good). So now I have gone back down. I am back to wanting to stick my finger up at them and tell them where to go (in a very rude and unlady like manner). My problem is that I get destructive - I swallow it down and down down until I cant keep it in any more and its like an explosion of rage. I do stupid things. I fear losing my job (money). I fear going back. I fear that I am an explosion waiting to happen.

Then there is the part of me that has already left that place and moved on, focusing on what I want to do, develop and make a success.

There is also the part of me that worries that I am damaging LittlemouseLilly by being so open and honest.

The really stupid thing with work is that they wanted my attendance to get better as I have had a bad run over the last couple of years so by putting me on an attendance capability procedure (jump through hoops to ensure I attend work because yeah like I want to be sick) they actually triggered a worse response. If I had been left alone then attendance would naturally have improved and they would have had their productive and effective employee who was genuinely happy to work there, now when (if) I return they wont get a happy employee they will get one who is looking for the first opportunity to jump ship - just stupid. 

Photo A Day - Day 151

Animal - real or imagined

Uli

Today I have made an effort, not only did I remember to make the loaf of bread in time for us to actually have a sandwich for lunch but I also cooked dinner. This may not seem amazing to most people, but Mr Mouse doesn't have an appetite and at the moment nor do I (also when I am busy I will often forget about food).

We will both go for most of the day and then realise that we haven't eaten much or anything. Now I am normally very good and make sure that I eat (except on weekends those are the days that I am allowed to be bad) and that Mr Mouse gets at least dinner. But I have been slipping, I have been finding it very difficult to motivate myself to go into the kitchen, or I have been lost in my own little world and not realised the time and then its simply got to the point that its too late. But today I was determined.

I even managed to fit in some product photography with my new jewellery bust and props I brought for bracelets and earring, unfortunately the gold frame belongs to Mr Mouse and he wants to actually put a picture in it so I might have to find a new background prop. These are some of the results:

If you like these dont forget that I am giving them away click here to see how to enter.

While I was taking photos poor Ferd tried to help and almost knocked the frame over so he got sent to his bed - here he is looking rather fed up (guarding a tennis ball as naughty Mummy stole two off of him this morning - I did promise to buy him a new squeaky one his favourite kind).

Photo A Day - Day 150

Dry

Used to dry my tears


A trip to the doctors and another sick note, I go back in 2 weeks and at the request of the doctor I booked a double appointment - I have a lot going on at the moment.

Everything seems to be flaring up and deteriorating most worryingly my lungs seem to be going down hill again, I have started to take my steroid inhalers again and seem to be helping a bit so hoping that I am not going to get a full on chest infection (but unlike last time if I need to I will ring for the paramedics). 

We discussed my Raynaulds and there is the possibility of some medication - I will research it and see how I go over the next two weeks (my feet are painful at the moment and I have chilblains so that doesnt help).

We also obviously discussed my stress and anxiety - I am being referred to some counselling.

Photo A Day - Days 141 to 145

Argh I still haven't updated the rules page :(


My list ran out and although I blogged more rules I hadn't written them into my filofax so I decided to have a bit of a free choice week.


I have been feeling a bit blurgh - I have a permanent sore throat, which gets worse as the day goes on and have  intermittent earache. By bedtime each day I feel like I have a mild fever, my face is flushed and hot on a couple of times I have been that convinced that I have a temperature that I have stuck the thermometer in my mouth - I sit there it goes beep and mocks me with my 'normal' below average temperature :/


I couldn't face actually speaking to work - physically couldn't do so I texted in to say that I had been signed off.


I am feeling better - but then that's because I have kinda 'ignored' the whole issue this week and instead have been doing other things. But the anxiety is there, underneath lurking, waiting to erupt again. 


So my photos - again each has been taken on the day just doing a catch up post.


Monday 16 January - Day 141

The morning was cold, there had been a hard frost during the night and it clearly lighted the Ferd run in the garden - he has a sort of set circuit that he has to do first thing 'morning inspection' 


Tuesday 17 January - Day 142

I felt up to taking Ferd for a walk today - not far, just to the local playing field and a tootle round the graveyard, a quick 'hi' to Mr D H Lawrence.


Anyway I was absolutely disgusted by the amount of dog mess not just on the path and up the little lane towards the graveyard but also all over the playing field. Seriously if you are not capable of clearing up after your dog then you are not a responsible owner and should NOT have a dog GRRRR


The picture is of my Dicky Bag, some might say expensive (I did at first), but I saw the benefits of one on our doggie holiday and all I can say is money well spent (no more juggling bag of poo and camera).


Wednesday 18 January - Day 143

My sick note - still not totally sure about stress, think more a combination of stress, depression, anxiety and ME - trouble is I don't know the doctors and they don't know me so it makes it all the bit extra difficult. Mt old doctor knew me and ME and everything.


Thursday 19 January - Day 144

Ferd finally managed to get into his bed - normally its occupied by a cat. The only reason that he is in his bed is because I came over with a case of housewifeitus - I did a rather large pile of ironing that had been mounting up. Ferd tried to clamber in top of my clean washing (which was piled on the sofa) with rather muddy paws so he got shouted at hence the rather grumpy/resigned expression.


Friday 20 January - Day 145

I was trying to sneak up on Mr Mouse and get the white hairs in his beard - instead the photo makes him look ginger. Now I have nothing against ginger. Ginger Nut biscuits are very nommy, but Mr Mouse is not ginger. I think all the white hairs are just highlighting the natural 'strawberry' tones.

Photo A Day - Day 140

Transport


I realised that I had missed out a theme (despite my list) - I blame my brain (I know I still need to update the rules page)

travel in style

So I am now getting sleep.


But there is still a problem - I wake up just as tired/if not more tired than when I went to bed.


I have a constant mild sore throat, with 'gunk' running down/coating the back of my throat. I start of the day cold, but as the day moves on I get hot. Really hot. In fact I feel like I have a temperature, but the thermometer says no.


The pain levels have reduced since getting sleep - but instead of the spiking extreme pain that ebbs, I now have the constant wearing dull ache and gets more challenging to deal with as the day goes on. 


I am finding concentration difficult - a few weeks ago I could sew and follow a TV programme at the same time. Now well not so much and I am finding that I need to have breaks. 


I have been noticing for a while that my ability to read has gone down hill - I go through patches where I cant take it in and read a passage/chapter and have absolutely no idea what I have just read or keep re-reading the same sentence stuck in a sort of loop - now this is devastating as I love to read, reading is an escape. I used to devour multiple books in a week now it takes me months to read a book that would have taken me a few hours.


I have to keep re-reading to re-find my thread while writing these posts and the save button is my friend.


Now my constant fear is a full ME relapse. 


Over the years me and ME have come to a sort of understanding and we have been muddling along. 


My worry is that these are not new symptoms - they are giving my a glimpse back to when I was bad - not at my worse but bad. Is it blip? A gentle (if unpleasant) reminder! Or am I heading back to those worse days? (I did a post on ME a while ago here)


Or can everything be put down to stress - I have to confess I dont really know much about stress (despite doing a stress course at work some time ago). I dont feel 'stressed'. Stressed to me is 'oh my god I am doing to many things and I cant fit it all in and I dont know where to start'. But then I read what stress is and well I recognise those feelings - but its soo much like depression and anxiety. I cant help but feel that if I was still with my old doctor he would have said depression over stress. A mixture of both? 


I cant face work (the desk job), I cant face the people, I cant deal with talking to them - not because I feel that the work is too hard, I have too much, or that targets (hoops we all have to jump through) are unachievable. My problem is I feel betrayed, let down, confused, I thought they were being understanding/supportive but feels like that rug has been pulled out from under me. 


I am worried about losing my job (mine is the main income and we've just brought a house, so worried about losing the house). I am worried about what would happen, I know that given my history finding a new job would be challenge, given the economic market finding a new job would be difficult. I am worried about the possibility of a serious health decline and what that would mean. The benefits system was hard enough before and I feel that its even harder now and that I would fall between the cracks time and time again - I distrust it. I am worried that I would be forced to use the small amount of savings that we have (using to off set the mortgage) before I could even be eligible for anything. I am worried that I wont be able to return to 'that' office as I don't know if the trust can be rebuilt - would I ever feel comfortable calling in sick - would I struggle in when I shouldn't and therefore do more harm than good to myself.


I am worried if I will survive.

Photo A Day - Day 138

Looking in...

...into my button tin 

Well I went to the doctors today (so did Mr Mouse and the Ferd went to the Vets - its been one of those days).

The doctor does not think that I am depressed - or at least maybe a little but he cant make that assessment after only seeing me once (the joys of the modern system - and ok this was only the third appoint to this practice but yes 3rd Doctor) - the overriding issue that he thinks I am suffering from is stress. I guess that depression and stress can be different edges of the same blade.


I dont really understand stress - to me I dont feel stressed. Stressed is someone in a panic because they have a massive deadline or have taken a lot on .... oh I get it... erm I have had a lot to deal with in the last few years.


He signed me off for two weeks (ooops forgot to contact work - still cant face actual talking so I will email hope they understand and dont try to phone me - really couldn't cope with that - yep just thinking about it and I can feel heart hammering).


He did suggest a month - but thought that two weeks would be a good start and see how I go from there.


So I have some breathing space which is good.


I did manage to face the supermarket yesterday evening but that was almost too much, I almost walked out, but made it round. Luckily it was the evening so didn't have to wait too long at the till and thankfully I didn't get a 'chatty' till assistant. I was shaking by the time I'd got back to the car and was on the point of tears. Dear gods since when did buying milk become so hard? I haven't really been eating not hungry and when I am I dont know what I want or cant be bothered, so I did buy a couple of cheat meal - just so that we actually had dinner.  But on the other hand I was fine with a Post Office run for LittlemouseLilly order today! 


I need to evaluate.

Photo A Day - Day 137 & Vintage finds

Bright

Today I am not feeling very bright.


I didnt sleep last night, I did manage 2 hours this morning. 


No sleep has left me in a lot of pain and I am finding concentration difficult - so pictures today.


But during the night I finished off some jewellery, did some tidying and decided to share a magical box with you.

This magic box is filled with vintage jewellery. It belonged to my Great Aunt and it almost got thrown out (in fact some did get thrown out years ago - I found this lurking and saved it).

Most of it is broken or needs re-stringing and all of it needs a clean.

Now I think that nearly every piece is wearable - once they have received some TLC (re-stringing new findings). There are a couple of bits that I really like and will wear but at the same time there are bits that will just stay in the box unloved.


So I was thinking TLC for those that can be repaired, re-working for those that cant and then sell the ones which aren't 'me'.


So these are the before photos: 

Some random bits

So what do you think? Is there anything that you would like?

Photo A Day - Day 136

Transparent

Thank you to all the people who read yesterdays post and commented - here, twitter and blipfoto. I was overwhelmed by the support - it really means a lot to me. 


So on the theme of transparent I was thinking that I should be more transparent with work!


Yes they know about my conditions - I applied for the job as a disabled person, I have never hidden this fact, I have been open and honest. But have I?


Like many people with chronic conditions I gloss over the truth - I have long learnt that when people ask "how are you?" They do not want the truth. Not the truth, the whole truth and nothing but the truth. The answer that is preferred is "yes I am ok, getting there, much better".


I have given little talks in team meetings, I written accounts of me and ME, I have always said ask me questions. I really do want people to ask me questions to talk to me, but even then on the odd occasion that they have I feel I am either too honest or too guarded (depending on who they are). I have only ever had one team leader (god I hate that term - manager) who has actually asked for more and even went as far a borrowing a book and reading some of it to understand.


I have trust issues I am beginning to realise just how much these are in evidence.


I became ill when I was a teenager - friends drifted away, lost interest long before I had a diagnosis. I even had a friend who thought I was claiming benefits just because I didn't want to work - easy money.


How could they not understand?


But my issues with trust don't just stop with 'friends'.


During those early years of not knowing what was wrong with me - constant throat infections, pain, tired, dear god I could sleep for 24 hours and the mere fact of getting up would exhaust me. I also was dealing with cluster migraines and seeing neurologist (not that it did a lot of good - Migraines are triggered by a series of 'environmental' factors and I exhausted their drug suggestions ranging from full on anaphylactic reactions, mild reactions, intolerances and just down right tripping out). But during this time trust issues with doctors was really thrown up into the air.


I had bad experiences with doctors before, but not their fault (that doesn't make sense - as a young teenager I went to to doctors and didn't see 'my' doctor and I felt I was dismissed as a stupid child bothering their precious time all I had was a little throat infection - turned out I had scarlatina (aka Scarlet Fever), but then that's how it presents at first - I remember being a bit out of it and my Mum taking my temperature and declaring that I must be dead or the thermometer was wrong - I wasn't dead and the thermometer wasn't wrong I had a temperature of 105 F. So not the doctors fault that I was ignored but start of trust issues. Ummmm maybe an early trigger for the ME now I look back, I guess we will never know). 


Real start of trust issues came when I went in with yet another throat infection - I was at college probably around 17 and I had no choice but to see a locum - now this locum had been reading my notes and declared that I should be on the pill - no medical reason other than my age and obviously at 17 I was having sex and lots of it and hoping into bed with anything that breathed!!!! I was a little taken aback, shocked, not really sure how to handle it I stammered that I didn't need it as I was still a...a.... virgin (OMG I know 'cause like that is sooooo shocking). Now I could also have countered that if he had been reading my notes he would have seen that I was receiving on going hospital treatment for migraines and I was on regular antibiotics but didn't - shocked, I was and still am very shy.


Ok so thats bad doctor 1 (or 1.5!)


Bad Doctor 2
I was on a field trip with college in Devon - when my lips started to tingle. Panic. OMG I know what this means. No I am imagining it. Nope lips really swelling up. Antihistamines, wait 10 minutes - oh god has it been 10 minutes yet. Still swelling. Antihistamines. Antihistamines. Get help. 999. Paramedics. Adrenaline shot. Nearest A&E required ferry. Last ferry gone. Arrange for a doctor to meet us at local medical centre. Well did the doctor meet us - no. I spoke to him on the phone.


Ok actually not so bad - you see there was actually nothing that he could do for me - me and the paramedics had done it all. 


As that was my second medication related allergic reaction, I got an epi-pen after that (auto injector of adrenaline - life saving, essential and yet I still have to pay for it!)


Bad Doctor 3
The hospital had prescribed me an anti epileptic drug for migraine prevention - now this medication made me feel strange so intuition told me to stop taking it. I had been seeing Uber Doctor (ie the one that they actually make your appointment with) I then got past off onto underling - who declared that ME (which I mentioned because of medication reactions) was psychological and that I should have continued with drug, in fact I should re-start taking at a higher dose and I was not to stop. Well ok ME thing fuming but drug thing, figured he is a doctor. So started taking it again - carried on taking it despite odd feeling - had blood tests that you have to have on the medication. All fine. I still felt odd. Mentioned to my GP how I felt on it - kind of out of it, a bit spacey, not really there - he hit the roof, told me to stop taking it immediately, no reducing - stop and never take it again.  


Bad Doctor 4
I was visiting a friend in Wales and I knew that something just wasn't right - I was taking antibiotics for a throat infection. Well my neck went into spasm. I was in so much pain that I went to A&E. Again I don't feel that I was listened to, I suspected that I was having a form of toxic reaction. I was basically told not to be silly, I had slept wrong, go home take pain killers and use heat. Heat made it worse, over the counter painkillers = smarties for all the good that they do. Well I had to stay with my friend - I was stuck I couldn't drive. Well after an extra couple of days I decided that I could at least make it to Oxford from Wales that was at least half way to home in Essex and we had a house there that I could go stay. Well I made the drive I was slow and cautious and very very careful. By the time I made to Oxford I could move my neck a little bit, but I was in agony. I made my way up to my bedroom and laid down on the bed. So much pain. Now something in my head told me that if I didn't drive the rest of the way home (to Essex) that I would never see home again - its one of those strange experiences that I will never forget and cant explain beyond witch intuition. Now I did make it home to Essex and the next day I collapsed and yes you've guessed it tingle and swelling.


I knew the drill, we all knew what to do - this was back when some doctors would still give out home numbers and do real out of hours. Phoned doctor and he confirmed toxic reaction leading allergic reaction.


You see allergic reactions - don't always happen straight away, drugs can have an accumulative effect - that's how some are designed to work. Similarly you can be exposed to something with no problems for years and then out of the blue....ohhh my lips appear to be tingling.


Bad Doctor 5
I was working at a shop and they were really strict over time off and could be really funny. Now I was ill and desperate and asked the doctor for a sick note - she refused I was so frustrated that I burst into tears at which point she declared that I required CBT - ME people you will know. Non ME people - CBT = Cognitive Behaviour Therapy which in most cases for ME is counter productive.


Now I left that surgery straight away - and was glad that my old doctor was happy to erm bend the rules. He was shocked when I told him what had happened and said that CBT was the last thing that I needed.


Bad Doctor 6
No you cant possibily have PCOS - even though you have multiple symptoms.


Bad Doctor 7
You have PCOS - read this. You're one of the lucky ones.


GRRRRRRRRR


There have been good doctors. And fingers crossed so far so good with new surgery. Do miss the old days where you had a doctor, you saw your doctor, you knew your doctor and your doctor knew you. It can be exhausting having to keep re-explaining things.


Anyway so I think I may have gone a little bit off track.


Trust issues - people that I thought should have known better and people in authority.


So maybe not always been as transparent as I could/should have been - so I am going to write a bit about each condition - yes I said each - tell the truth and how it affects me.


Maybe I do still have a little bit of fight left! Or maybe I just simply want them to know! I am not sure yet. 


But I have decided that I will continue blogging my journey and hope that my honesty will help. Help others know that they are not alone, help others understand, maybe even help someone else to have the courage to speak up.  

Photo A Day - Day 135

Red

I was absent yesterday - absent from twitter, blogger, blipfoto, work and from life


The theme red yesterday so could have easily been blood.......so could easily have not continued....


"I aten't Dead" - Granny Weatherwax


I had spent a fitful night crying but with tears that would not come, then around 6ish in the morning I gave up, I came downstairs and finally the tears came, I bawled my eyes out. But along with the tears came something else as I slid further down that dark passage. I wanted to cut myself, to run a blade across my skin to see the blood.


I used to self harm - yesterday morning was the closest that I have been to doing it in years. Self harm is not about attention seeking, showing off or wanting to die. Its about validation of pain, proving that you really are still alive. Most people would never have known that I self harmed - we are masters at hiding it. I wore long sleeved tops or I cut or burnt myself in places where no one would see.  I was clever just enough for the pain and the blood but not enough for permanent visible scars - well mostly there are a few tail tail reminders (if you know where to look).


I knew how easy it would be to walk into the kitchen and grab a knife to run its blade along my arm and have that release - but I also knew that I would be disappointed in myself, that I didn't know if I could stop. My mind was being destructive and I wanted to destroy things - but again the small part of rationality that was holding on for dear life told me that I would regret that some things are irreplaceable.
That small part of rationality made me put the knives in Jeeves (the dishwasher) and turn it on. 


But I think that the small part of rationality might have fallen in and got trapped.


I was tired, tired of everything I wanted sleep, I wanted oblivion.


It was not a suicide attempt - but I knew that it could possibly kill me - I just wanted some rest so I took a sleeping tablet (one that I know that I am allergic too).


If anyone has ever gone into anaphylactic shock - I have its not fun - then you will understand just how irrational I was being - thankfully all I suffered was tingling and mild swelling of my lips and a shocking headache (sadly no sleep).


I knew it could kill me I left a note for Mr Mouse:
"I have taken a sleeping tablet
If I am dead ring work and tell them I hope that are fucking happy
If I am not dead ring work and tell them what ever you fucking like"


I got a very deserved slap from Mr Mouse when he woke up (no he does not beat me, he is not violent - he was just scarred, I know because he has put me in similar situations with his depression).


Mr Mouse made me sit in the corner of Woe all day - I was not allowed to open my package that arrived, I was not allowed to watch Jewellery Maker TV, or any other random rubbish that I normally put on. He did let me play with buttons and fabric - he knows that sewing is my therapy.


I am not proud of myself - I just wanted the world to go away to give me some peace.


So why the venom towards work?


I have multiple health issues - these are not something that I have ever hidden, with the exception of one to its true extent - depression.


Well despite that I thought I was getting back on track - I was told last week that they are putting me through the 'capability' procedure for absence. Its not a reflection on my quality of work, but to help me, to make sure that everything is in place for me to be a productive employee or whether there are adjustments that can be made blah, blah, blah. Now there are a few steps to the official procedure - but yes you've guess it the ultimate consequence is no job.


Now last week I was pissed off, I was ready to fight. I had an enjoyable weekend but I knew that anxiety was lurking under my skin and that I was walking further into the dark. The fight has turned into a destructive rage. I am the little girl who wants to run to her mummy but I have been swallowed up by a monster.


I still need my Mum to tell me that I am not a mess - to remind me what I have achieved.


I battled ME and depression, they never left, but I was able to rejoin life. For years I have held down full time jobs including active jobs. I learnt that to support myself meant I had to sacrifice other parts of life - its choice I was happy make.


Ironically this year my 'absence' has been less than last year - the ME side of things is improving (well unless the anxiety, stress, depression take a real good hold). This year its has mostly been down to my back. I originally injured it as a teenager, but beyond the odd flair here and there its been fine all these years. Until Easter 2011 when I woke up in agony, I struggled through a day. The next day I woke up in agony and tried to walk but collapsed. Waiting for paramedics to come out to pick you off of the floor is not fun, having to attend out of hours doctors at your local hospital it not fun, screaming in pain at the slightest of movements it not fun. Having to get your husband to help you dress, move etc is not fun. Waking up in the middle of the night screaming in pain is well yes I think you get the idea. 


Not long after it improved I went again - spasm. And I was told that it could take months to get better again. A few months ago it went back into spasm, now I knew that it was causing sciatica - what I didn't realise is that 'most' people only get sciatica on one side I get it on both - so makes mobility even more problematic when it goes. It has gone back into spasm a few more times and I have a suspicion that my extreme periods may also be setting it off.


I have now been told that its another chronic condition to add to my list.


But I have been referred to the hospital and I am due to start what I am calling back school soon. There is nothing that can be done for my back - I just have to learn to control it and have to build up those core muscles. Ah there's the rub - ME limits my physical activity.


Anyway so work know about this - they must understand that I am not malingering...right!?


But then absence has been an issue for the last few years - I have had one or two things to deal with that have all had their impacts on my general well being - threw me out of balance. 


I am disabled  - there I have said it sometimes I don't think I say it enough - sometimes yes I think I should be given praise for just getting up (and maybe cake and presents). 


I defy anyone who is of 100% health to have coped with my last few years.


2009 I got married - now planning the wedding was not stressful, it was enjoyable (there were a few family political issues to deal with but not much). But and there is a big BUT...


Pre-wedding/during wedding/just after wedding (some of these events might be out of order as you can imagine the last few years have been a bit of a jumble, some things have probably been missed out, some things, full extent have been deliberately left out):


Mr Mouses Mum had a stroke - very worrying time indeed, thankfully fine now (well in the grand scheme of things), but we all had to learn and promise to abide by her do not resus wishes (a reality of life but not something that you want to be facing when you are at the end of your 20s). She has been left with some mobility issues but she is an amazingly strong woman and fights on.


My dog developed a mystery illness - I had a spaniel before Ferdinand - he was a black and white English Springer Spaniel, we got him on the day of my grandfathers funeral and he was my companion while I was ill, at times he felt like my only friend. We discovered that it was puppy mites (he was 10) and he seemed to rally (but the story doesn't end there).


My Mum already feared that her Cancer had come back, she was having nightmares and was afraid that she wouldn't make it to the wedding. We kept these fears quiet. Hoping for the best, silently fearing the worse.


Mr Mouse finally admitted and sought help for his depression - that's his story to tell not mine.


My Dad had a suspected DVT - again a worrying time.


In the back of our minds I think we were always wondering if Robins Nan would make it to the wedding (she did).


Wedding - the last photos that I have of my family together (well almost complete - my Uncle (mums brother) was able to make it over from America but my Aunt needed to stay behind and look after their animals). A wonderful day.


Mr Mouse was manoeuvred into a position where he felt he needed to quit work for his sanity - freelance was always where he was heading anyway - we knew that there would be financial issues but we thought we could cope.


My dog seemed to be declining.


Then the news that I knew was coming but totally floored my anyway - My Mums Cancer had come back.

Finally a doctor seemed willing to send Mr Mouse for tests on his neck - MRI scan - and a not very helpful letter along the lines of - surgery not needed at this time, maybe required in the future, hope the pain gets better. No offers of support or physio nothing.


I finally got sent for an ultrasound scan - I think the doctors only sent me to shut me up, never expecting that what I had been telling them for years was actually what was wrong with me. I was finally diagnosed with polycystic ovary syndrome. When I saw doctor for the official diagnosis - I got told I am lucky, one ovary is perfectly fine and that having children wont be a problem - she didn't answer any of my concerns (ie increased risk of diabetes, possibility of pre-diabetes, stoke risk - yearly tests that I should have - she just printed a leaflet - one I'd already read and told me to ask the questions). Queue another doctor and lots of reading and while not impossible, starting a family might not happen. Every year older makes it more difficult. How do you come to terms with keeping up hope but having to be realistic? 


And the associated risks are very real, I need to have yearly MOT.


Now why did they not pick it up - well most doctors are under the delusion that you do not have or have limited periods - I am regular but they are mostly periods from hell. I once told an occupational health nurse what I took and she informed me that most people would take one or the other, maybe two, but not all three. She said that given the severity that they can be, they would likely to be covered under the Disability Discrimination Act!


My dog had to be put down - I was with him at the end - we discovered he had liver cancer. Not only was he my dog he was Mums and she knew that she would not live to have another dog.


I got flu - now it was probably swine flu but never diagnosed as that - which lead to chest infection. Another chest infection. Another chest infection. And another when I really should have called the paramedics as breathing was that bad. Poorly lungs needed steroids for a bit.


We were struggling to afford our rented house on one income (I had debts left over from uni - despite being disabled and being told that I would be able to continue to claim some benefits, I wasn't so credit cards made up the shortfall). My Mum offered us life line - she said she wanted Me to have the family house in Oxford - that way she knew that I was provided for and my Brother would continue to always have a home there. So we moved unfortunately work did not move but while I was job hunting my sister-in-law kindly offered me a bed during the week.


We spent as much time as we could back home in the village - visiting my Mum, Mr Mouses Mum (more health issues - gangrene a lost toe and threats that she might lose more), Mr Mouses Nan (her health was continuing to fail).


ME and its needs were forgotten as I pushed my body to its limits and beyond - I started to crash - I ignored it.


Another dog was put to sleep - Mr Mouses 


Mum lost her hair, but never her sense of humour. 


She had a bad reaction to the chemo and had to be taken off of it.


We were just getting ready to celebrate our first wedding anniversary......


....Mum past away.


I was not listened to - Mum ended up in a different crem to Grandma and Granddad. Will never changed. Will not what Mum thought it was. Too many people. House was never going to be mine - house that meant so much to me, over a 100 years of our history gone. Fractured family. Open wounds. Homeless. No where to go. Back home. Job over 100 miles away. Keep on. Crying for help. No one heard. Big mess. Rage. ARGH. No idea how long. Only option find new job. Big mistake. If I had known we were just about to get an offer I would have stuck it out.


But then it didn't end there.
2011 - our dog was attacked by the neighbours dog (a bit more about that here) more stress. Anxiety. Fracturing. Feud. 


Robins Nan past away.


Mess. Rage. Screaming in pain.


Needed to get out. Space - South too expensive. North not. House hunting. Offer. Bank. Mess. Almost lose house. Get it sorted. 


Back at office that I feel comfortable. Starting to heal. Not doing job that I want. Dont think I am really welcome back. 


And BAM....


I have re-read the above and I am trying to decide - delete - publish.


In fact I am feeling anxiety about that decision.


Have I been too honest? Not honest enough. Will letting the mask of the Mouse slip, damage the Mouse? Or will it help to make people understand? Not just about me, the person behind the Mouse, but understand other people who are going through though times, suffer depression, have hidden disabilities?


Will it make people understand that I create as therapy, it reminds me I am alive, to see beauty, to know that I have taken bits and made them into something. That for someone to say that like what I have created (even better buy or commission something. I need to fund my therapy, fabric, buttons and gemstones aren't on prescription - but maybe they should be) is wonderful and yes even constructive criticism with regard to my creations is wanted and craved - otherwise how do I continue to grow!?


So delete or publish?


I have read through again the anxiety over the decision gone as I realise its already been made. Labels filled out.


Now the anxiety returns - I know that once I have pressed that publish button its out there.


Save wait a few moments more.....


The decision has been made I will press publish. But I am that little girl waiting for her Mum to say "go on its ok, you have nothing to fear".