Its late and I am very tired
Saturday, 14 January 2012
Friday, 13 January 2012
Photo A Day - Day 138
Looking in...
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.
 |
| ...into my button tin |
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.
Thursday, 12 January 2012
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?
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?
Wednesday, 11 January 2012
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.
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.
Tuesday, 10 January 2012
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".
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".
Sunday, 8 January 2012
Bed Throw
Ok so at the end of last year I brought you my personal snuggle blankets:
Sofa Snuggle
Sentimental Snuggle
Knitted Snuggle
This is my bed throw (and some of my secret tips!), I do have a thing about blankets and throws (we have far too many - thank the gods for vacuum pack).
Its a patchwork quilt - I found the feature cat material in a remnants basket, I added some fabric from fat quarter packs (I do admit that I have a bit of a fabric problem) and then some vintage fabric and upcycled fabric from my stash (I am sure I can't be the only person that has ever brought an item of clothing with the fabric in mind for its stash possibilities once its no longer wearable - or has even brought something on sale/charity shop just for the fabric).
Rather than use quilt batting or wadding and erm quilt (this is lazy quilting but it really looks lovely - at least I think so) it has been made with a 4.5 tog duvet (king sized - for all you crafty bargain hunters out there you can stock up on these in the summer when the supermarkets bring them to you at amazing prices - cut them up join them together etc), then to ensure that I had a piece of fabric large enough for the back - this is top tip time - I used a king sized flat sheet (cheaper than buying lengths of fabric and joining them).
Then to make it washable and ensure that the duvet inside doesn't 'slip' (as its not proper quilted) I have added gorgeous buttons (yes I have a button fetish as well) to the corners.
Sofa Snuggle
Sentimental Snuggle
Knitted Snuggle
This is my bed throw (and some of my secret tips!), I do have a thing about blankets and throws (we have far too many - thank the gods for vacuum pack).
Its a patchwork quilt - I found the feature cat material in a remnants basket, I added some fabric from fat quarter packs (I do admit that I have a bit of a fabric problem) and then some vintage fabric and upcycled fabric from my stash (I am sure I can't be the only person that has ever brought an item of clothing with the fabric in mind for its stash possibilities once its no longer wearable - or has even brought something on sale/charity shop just for the fabric).
Rather than use quilt batting or wadding and erm quilt (this is lazy quilting but it really looks lovely - at least I think so) it has been made with a 4.5 tog duvet (king sized - for all you crafty bargain hunters out there you can stock up on these in the summer when the supermarkets bring them to you at amazing prices - cut them up join them together etc), then to ensure that I had a piece of fabric large enough for the back - this is top tip time - I used a king sized flat sheet (cheaper than buying lengths of fabric and joining them).
Then to make it washable and ensure that the duvet inside doesn't 'slip' (as its not proper quilted) I have added gorgeous buttons (yes I have a button fetish as well) to the corners.
Photo A Day - Day 134
Garden Visitor
Luna is 'visiting' the garden.
I knew that this one was going to be hard - we do get birds in the garden but not that many (cats, dog and no feeders - this year we will be starting to sort out the garden)
 |
| Sniffing the fresh air |
I knew that this one was going to be hard - we do get birds in the garden but not that many (cats, dog and no feeders - this year we will be starting to sort out the garden)
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