Today I've decided to link my youtube channel instead of writing because my cursor keeps highlighting and deleting what I have written which is driving me mad! Just writing this has taken 4 attempts and I had written 3 paragraphs but lost it all!! To be honest the videos were so spontaneous I think I've said it all. I was surprised by how emotional I became but I have chosen to share them because I want to encourage other sufferers to not feel ashamed or embarrassed by their conditions. Especially the hard times.
It's a frightening thing to be so vulnerable on youtube but if these videos help just one person feel less isolated, alone and misunderstood then making myself vulnerable is worth it.
I dream of creating a youtube community where people can support and understand each other and inspire one another to carry on the fight for a better quality of life despite their illness.
https://youtu.be/S60424Y3NEo
https://youtu.be/gkplmyyy-Y8
https://youtu.be/Zz0bUrA1BoY
https://youtu.be/CUJ86u-UhiM
Wednesday, 22 July 2015
Saturday, 11 July 2015
The joy of the benefits system.
Well, to say these past two weeks have been stressful would be a huge understatement....
It has been tougher then tough.
First came the letter telling me that I had attended a medical exam and the assessor had deemed me fit to work and as a result my claim for employment support allowance had stopped and I was being taken out the system. Despite the fact that each time they've requested a medical certificate I have indeed sent in a medical certificate I only every received one payment which was back in April. Since then Tony and I have been surviving on my disability living allowance and his carer's allowance (his being £62.00 a week and mine just about covering our monthly bills, not exactly what it is designed for but needs must if we didn't want to be £300 over drawn every month with no electric) I have always vowed that my blog and youtube channel will be honest, an honest account of what it is like to live with chronic disease and disability and as much as it pains me to write this and as embarrassed I am to admit it things have been so hard most of our food we have gotten from the local food bank. I can't believe that things have gotten that tough but they have. I cannot put into words the guilt I carry around about that.
When you are genuinely unwell and reduced to living on benefits because you have to rather then you want to the whole system makes you feel like a social outcast and that you should be utterly ashamed of yourself and when I sit and really think about the guilt I carry around I have to remind myself that the only thing that I am truly guilty of is having an incurable disease. I try to talk to myself (I know that sounds a bit mad) as if I was trying to comfort someone else in my shoes. Then I try to listen.
Anyway, back to my ESA claim. I filled in their 22 page health questionnaire and handed it in at my local job centre, not an easy task when you have crippling hand pain due to dodgy ligaments and early on set arthritis but I did it none the less. I'm so glad I went to all that trouble when now they have shut down my claim and can't carry the questionnaire over to the new claim. I can hear you asking how I could ever fail a health exam with my extended and complex health needs and disabiliaty but here's the thing. I never did attend a medical. I was never even invited to attend a medical. When I rang the helpline (and eventually got to talk to someone after being on hold for 37 minutes) they admitted that it was a clerical error their end but their was 'nothing they could do' and I would have to make a whole new claim which could take up to 3 months to process.
Again with the painful honesty, I cried down the phone to the poor woman on the other end and when I hung up I sobbed into my hands. Really sobbed.
The following day I planned my day to totally dedicate it to making a new claim again, I dug out all the relevant forms and letters that I knew I needed to give them (hospital addresses etc). Then the post arrived with a letter that would wind me and bring more stressed out tears.
I received a letter from my local council telling me that the department for work and pensions who are in charge of the ESA system had been in touch with them and told them that I had been cleared for work and as a result they were suspending our claim for housing and council tax benefit. Honestly the stress and anxiety that letter caused and is still causing is enough to drive anybody insane. We are now down not only the ESA but also my housing and council tax leaving us with full rent and rates to pay until this mess gets sorted out.
Once I calmed down I made the call to the ESA people to put in a new claim. I was on hold for 46 minutes this time and when I did eventually get through we got halfway through the new claim when the woman's system crashed and she vowed to ring me back within 10 minutes. 5 hours later and I rang them again. After being on hold this time for 25 minutes a message came over to tell me they were now closed and to call again tomorrow (or something along those lines)
So now we go into the third day. I tried ringing my council but after being on hold for what felt like forever I decided to hang up and call the ESA line again as that felt most important. This time thank goodness I did get through and managed to get all the way through the claim.
Although the ESA is a joint claim for Tony and I as I am technically the one unable to work I am the one who has to make all the phone calls and fill out all the forms. How can this possibly be right when you're dealing with a benefit that is given to people who are unable to work through disability or long term illness? Are our lives not stressful enough? Do we already not have to strive harder then anyone else to not quite ever be up to par? Why would anybody thing it is a good idea to put so much more stress on people who are in situations they would do anything to get out of?
I am sorry that this is such a moany blog and I am grateful that I live in a country that has a benefits system but my word, the system is so screwed up. It preys on the sick and the weak. It makes everything as difficult as possible as if to turn them off from trying.
It makes me feel sick to my stomach to think about it all, it really does. At the moment we are officially up the creak without a paddle. The little savings we did have are all gone and until the 'rapid reclaim form' comes through so we can reapply for housing and council tax benefits we are getting in debt all the time with our housing association and the council tax. I have a deep faith and I do believe that this is all in God's hands but sometimes I wish he would show us in our present time that it will all work out in the end. Perhaps he could give us just a little view of the future, just a slither.
I wish I had the capacity to start something amazing to challenge the way that people who need benefits are treated. Something that would make people sit up and listen, to show the world how 'the others' are treated. I just do not have it in me, I'm too exhausted. I feel like I am fighting infection after infection at the moment on top of all of my normal symptoms (many of which are worsening all the time, the ones associated with my bowel anyway) and I am just exhausted.
We first applied for these benefits back in January and here we are July and we have only every had one payment and that was 3 months ago! I daren't think who else is going through this. People who haven't got the support of family and friends, it must be hellish.
Amelia-Rose is of course completely unaware of any of this, Tony and I have squeezed the belt so tight neither of us can barely breathe but we (as of yet) have managed to pay for her tap lessons and her swimming lessons and still give her her £3 a week pocket money. For all of those children whose families have no choice but to let on how tight things are the knowledge of something so grown up in such a small mind but be beyond daunting. Children shouldn't have to live through this. For goodness sake it's 2015,how the government STILL not have a FAIR system that WORKS and is effective? How can clerical errors be allowed to cause a family to go through months and months with no income?
I always think it's funny how if you owe these people money they will hound you day in day out but if they owe you money it's like going 3 rounds with Mike Tyson to get it back... if you can at all!!
Financial stress, I believe, is one of the worst you can face, there is no hiding from being broke, it surrounds you and eats away at you. I know I shouldn't cry over money but the stress of all of this has reduced me to tears more times then I can count and hundreds of thousands of families go through it every single day. Thousands of families who are guilty of nothing but being unable to work due to poor health or disability.
These things are not going to resolve themselves if we rely purely on our government to do so. We need to come together as a society to care for one another and look out for one another. To keep an eye on our friends and neighbours and step forward to help out if we can. People are capable of greatness whether it's individually or as a collective and we have to search ourselves for that seed that can be planted and become a huge and towering shelter for those in need.
I hope one day when my health allows it and we are settled ourselves I can do those things that I have just written about. I volunteer at the food bank and was one of the three people that originally came up with concept of helping the community but I want to do more then that, I want to create a something that people can turn to in their hour of need. Even if it is just a support group for people who are dealing with the benefits system in our country I want to help. I don't want anybody to experience what we are living through at the moment. I wouldn't wish this on anyone. Something needs to be done.
It has been tougher then tough.
First came the letter telling me that I had attended a medical exam and the assessor had deemed me fit to work and as a result my claim for employment support allowance had stopped and I was being taken out the system. Despite the fact that each time they've requested a medical certificate I have indeed sent in a medical certificate I only every received one payment which was back in April. Since then Tony and I have been surviving on my disability living allowance and his carer's allowance (his being £62.00 a week and mine just about covering our monthly bills, not exactly what it is designed for but needs must if we didn't want to be £300 over drawn every month with no electric) I have always vowed that my blog and youtube channel will be honest, an honest account of what it is like to live with chronic disease and disability and as much as it pains me to write this and as embarrassed I am to admit it things have been so hard most of our food we have gotten from the local food bank. I can't believe that things have gotten that tough but they have. I cannot put into words the guilt I carry around about that.
When you are genuinely unwell and reduced to living on benefits because you have to rather then you want to the whole system makes you feel like a social outcast and that you should be utterly ashamed of yourself and when I sit and really think about the guilt I carry around I have to remind myself that the only thing that I am truly guilty of is having an incurable disease. I try to talk to myself (I know that sounds a bit mad) as if I was trying to comfort someone else in my shoes. Then I try to listen.
Again with the painful honesty, I cried down the phone to the poor woman on the other end and when I hung up I sobbed into my hands. Really sobbed.
The following day I planned my day to totally dedicate it to making a new claim again, I dug out all the relevant forms and letters that I knew I needed to give them (hospital addresses etc). Then the post arrived with a letter that would wind me and bring more stressed out tears.
I received a letter from my local council telling me that the department for work and pensions who are in charge of the ESA system had been in touch with them and told them that I had been cleared for work and as a result they were suspending our claim for housing and council tax benefit. Honestly the stress and anxiety that letter caused and is still causing is enough to drive anybody insane. We are now down not only the ESA but also my housing and council tax leaving us with full rent and rates to pay until this mess gets sorted out.
Once I calmed down I made the call to the ESA people to put in a new claim. I was on hold for 46 minutes this time and when I did eventually get through we got halfway through the new claim when the woman's system crashed and she vowed to ring me back within 10 minutes. 5 hours later and I rang them again. After being on hold this time for 25 minutes a message came over to tell me they were now closed and to call again tomorrow (or something along those lines)
So now we go into the third day. I tried ringing my council but after being on hold for what felt like forever I decided to hang up and call the ESA line again as that felt most important. This time thank goodness I did get through and managed to get all the way through the claim.
Although the ESA is a joint claim for Tony and I as I am technically the one unable to work I am the one who has to make all the phone calls and fill out all the forms. How can this possibly be right when you're dealing with a benefit that is given to people who are unable to work through disability or long term illness? Are our lives not stressful enough? Do we already not have to strive harder then anyone else to not quite ever be up to par? Why would anybody thing it is a good idea to put so much more stress on people who are in situations they would do anything to get out of?
I am sorry that this is such a moany blog and I am grateful that I live in a country that has a benefits system but my word, the system is so screwed up. It preys on the sick and the weak. It makes everything as difficult as possible as if to turn them off from trying.
It makes me feel sick to my stomach to think about it all, it really does. At the moment we are officially up the creak without a paddle. The little savings we did have are all gone and until the 'rapid reclaim form' comes through so we can reapply for housing and council tax benefits we are getting in debt all the time with our housing association and the council tax. I have a deep faith and I do believe that this is all in God's hands but sometimes I wish he would show us in our present time that it will all work out in the end. Perhaps he could give us just a little view of the future, just a slither.
I wish I had the capacity to start something amazing to challenge the way that people who need benefits are treated. Something that would make people sit up and listen, to show the world how 'the others' are treated. I just do not have it in me, I'm too exhausted. I feel like I am fighting infection after infection at the moment on top of all of my normal symptoms (many of which are worsening all the time, the ones associated with my bowel anyway) and I am just exhausted.
We first applied for these benefits back in January and here we are July and we have only every had one payment and that was 3 months ago! I daren't think who else is going through this. People who haven't got the support of family and friends, it must be hellish.
Amelia-Rose is of course completely unaware of any of this, Tony and I have squeezed the belt so tight neither of us can barely breathe but we (as of yet) have managed to pay for her tap lessons and her swimming lessons and still give her her £3 a week pocket money. For all of those children whose families have no choice but to let on how tight things are the knowledge of something so grown up in such a small mind but be beyond daunting. Children shouldn't have to live through this. For goodness sake it's 2015,how the government STILL not have a FAIR system that WORKS and is effective? How can clerical errors be allowed to cause a family to go through months and months with no income?
I always think it's funny how if you owe these people money they will hound you day in day out but if they owe you money it's like going 3 rounds with Mike Tyson to get it back... if you can at all!!
Financial stress, I believe, is one of the worst you can face, there is no hiding from being broke, it surrounds you and eats away at you. I know I shouldn't cry over money but the stress of all of this has reduced me to tears more times then I can count and hundreds of thousands of families go through it every single day. Thousands of families who are guilty of nothing but being unable to work due to poor health or disability.
These things are not going to resolve themselves if we rely purely on our government to do so. We need to come together as a society to care for one another and look out for one another. To keep an eye on our friends and neighbours and step forward to help out if we can. People are capable of greatness whether it's individually or as a collective and we have to search ourselves for that seed that can be planted and become a huge and towering shelter for those in need.
I hope one day when my health allows it and we are settled ourselves I can do those things that I have just written about. I volunteer at the food bank and was one of the three people that originally came up with concept of helping the community but I want to do more then that, I want to create a something that people can turn to in their hour of need. Even if it is just a support group for people who are dealing with the benefits system in our country I want to help. I don't want anybody to experience what we are living through at the moment. I wouldn't wish this on anyone. Something needs to be done.
Tuesday, 7 July 2015
Surgery update
Oooooookay people, we are on our way. Holy Moly this is actually going to happen. I am going to get a major organ taken out. There is a sentence I didn't think I would say.
When I had my ostomy surgery last year I always knew that the colon had to go and I knew the longer I had it still in tact the more the symptoms would increase and the more uncomfortable and poorly I would get. I felt so chipper after my surgery though all those symptoms felt a long way off. When I had to ostomy surgery my surgeon tried to empty the enormous amount of, well, you know what but he wasn't able to meaning I am quite literally full of, erm, you know what and it's been in there for over a year now. Gross I know.
In all honesty when I went to see my surgeon back in January he wanted to book me in for March but I was still deeply in shock about the last surgery without even knowing I was in shock. I thought I was doing great and just wasn't ready to think about more surgery. It wasn't until I spent mothering sunday afternoon on the bathroom floor crying, well, sobbing that I realised for the first time something was really wrong.
I guess admitting you have a problem is the first and hardest step and I am now waiting for counselling but Tony and I talk things through more then we did before.
I wish now that I had taken that first date (he actually offered me 3 in that appointment. I know I have bought this on myself but I wasn't even two months post op then and it all felt a bit too much) but I didn't and now it's my turn to live with the fallout. The symptoms are pretty awful to be honest. First there is the fact I am solid food intolerant again, then there's the horrendous spasms that will only ease if I sit on the toilet but by sitting on the toilet it triggers terrible back pain and pins and needles like you wouldn't believe in my legs!
Following on from those three symptoms there's the constant nausea that makes me feel like I have done a loop dee loop a thousand times. I also get headaches like I have never experienced in my life. Laying down in a dark room does nothing to touch these bad boys!
I suppose the most embarrassing would be the raging fevers that strike at any time. I can be listening to a child read at school (where I go in if I am well enough for an afternoon or two a week) and from nowhere be sweating buckets. I have had to start carrying a hanky with me because if I don't dab my forehead it will literally drip down my nose!!
It's also causing my joint pain to go crackers. I never knew the colon could be responsible for so much. Certainly not an increase in joint pain but indeed it does. (thanks to the NHS website for that nugget of information) I wake many days and feel like I have the flu. It really is pretty rotten. I talk with Tony about everything but I haven't really got anyone else to talk to. I don't want to upset my family, they have already been through so much with me that constantly complaining about my new rack of symptoms isn't going to help anybody else.
I think generally people simply don't know how ill I am. Obviously apart from my family no one else sees the illness. It's just there, a part of my life that is hidden below foundation, good blusher and a dollop of mascara and of course a great big smile.
My doctor explained to me that he is going to organise a nurse to come out to the house to show me how to use a disposable catheter as I've lost control of my bladder. (I know right, good times!) Possibly it's because of my colon but in a nutshell my bladder has over stretched which means it holds way too much liquid (which is exactly what happened to my colon and caused it to eventually fail) I use to be able to push down on my stomach to release the floods but now even that doesn't work very often meaning I am getting more and more and more uncomfortable and have to visit the bathroom every 30 minutes or so in a desperate bid to release it but to no avail.
So as you can see the colon has to go! I'm not sad about having to have a bag for the rest of my life but the idea of the operation itself, it's always nevre wracking going for surgery but this one feels bigger then the others.
There is no way we could afford to have it done privately which would make me feel so much more relaxed about the wrong thing but the surgeon has said if we could afford it then he would be happy to do the surgery in the NHS hospital and then have me transferred to the private hospital for the recovery. I have had nothing but traumatic experiences with my local hospital. They are so stretched for good nursing staff that if you go in as a disabled patient or have complex medical needs on top of the reason you are in hospital they just cannot cope with it.
The private hospital was just amazing when I had my last surgery, on top of having my own room Tony was allowed to stay with me day or night if I needed him and when I started to get very unwell with the infection the staff were 100% on top of it. They also really took in how much pain I was in without brushing it aside. When I've complained of pain in the past in NHS hospitals I've been told either it's in my mind (totally not true) or that there is nothing they can do and then ignored me and quite literally pulled the curtain around. I've also been passed a bloody tissue from under my bed and been told to put it in the bin myself when I pointed out it wasn't actually my bloody tissue. I've slept in bedding with stains and holes in and been left without water when Tony wasn't around to fill up my jug. I've never had problems with doctors or hospitals but I am terrified of staying in an NHS hospital after this op. The ill treatment of patients is terrible and I don't want to get an infection like last time and not come through it this time because it isn't picked up in time or taken seriously. I am sure this all sounds perfectly ridiculous to most but for me it's all about peace of mind and being in the best possible surroundings so I can make a full recovery as quickly as possible.
Like I say, the colon has to go. I need to take a deep breath and put it in God's hands. Everything will work out.
I hope!
If you would like to donate to our gofundme page created by a friend of our family please click the link and it will take you directly to our page. http://www.gofundme.com/foroursongbird
Wednesday, 1 July 2015
Sunday, 17 May 2015
There are always things to say.
It's been a long time since I last updated my blog or had any real interaction on social media, there's a lot going on at the minute and it feels like the walls are closing in a bit. I guess I need to find my voice again. I've written other posts updating the situation that we find ourselves in but I can't seem to finish them completely which tells me it isn't time for that part of the story yet. I will recall the tale of my surgery and recovery another day but for now be assured I am the proud owner of one stoma named Sophie who saved my life and I am very happy with. Having the illeostomy surgery was the best health decision I have ever made. Even though it wasn't really a decision as such!
There's so much that I want to say, that I feel like I need to say but let us just see what comes out tonight shall we? I've been suffering with depression for a few months now, it's not something I've decided to share with anyone really apart from a close few, it took an enormous amount of courage to admit that I was suffering with depression and the low days were indeed more then low days and something much darker had crept in. I had three days where I completely broke emotionally. I found myself on mothering sunday sat on the bathroom floor (lord knows how I got there) howling but silently howling because I didn't want Amelia-Rose to hear. At one point Tony came in and told me to get up and I said to him 'I don't know how' and I meant it. I literally didn't know how to get up off the floor. I had hit the bottom and I wasn't sure how to get back up again.
After that terrible day I knew I needed help. Even though I still retain the ability to look like myself on the outside and say all the right things and wear the right smile I knew that on the inside I had numbed to a point beyond recognition. I didn't know if I would ever see myself again.
Since that day I have been working on myself and I am trying to wrap my head back around the practise of mindfulness which has always been a great tool in the past. What I am is completely overwhelmed by the future. I don't have a joint that doesn't hurt anymore, I've lost the use of my colon already and now my bladder has stopped working (in that I can't go not that I leak!!) which makes me nervous about what may be next. Unfortunately I am back to throwing up whatever I eat which kinda sucks as I thought that would be ok again forever. I suppose it was more like a reprieve then a cure.
I volunteer up at the school two afternoons a week and help out at food bank every wednesday. Thursday I generally spend on the bed because the pain is so horrendous from the day before. I said to Tony this week from now on I am going to call Thursday 'Hurtsday' as I basically lose that day of the week.
Ok so lets talk pain. The pain is awful. I mean really awful. I have lost the ability to remember what it feels like to not be in pain and I know most likely I will go to the grave not remembering what it is like to be pain free. Generally I am able to manage the pain but it takes very little to tip into the 'not coping' camp. For instance if I have all my 'normal' pain but then get a headache (which I suffer from more and more. They are like migraines) then I will be struck down and stuck in bed. If I pop something that doesn't normally pop it will put me in bed overwhelmed by pain. Don't get me wrong I don't become this hysterical wailing woman, I refuse to begin to cry because of the pain because I know if I start I don't know how I will stop but I do become bed bound and my 'go to' techniques that I use to help with the pain stop working.
I am trying new meds but so far they aren't coming close to managing my pain. I wish the NHS would fund alternative therapies so we could at least try a different approach but we can't afford to fund these things.
Tony was never able to return to work after I got very sick in October last year, he is now my full time carer and at the moment we can't see a time when that will change although I like to think it won't be this way forever.
Tony becomes frustrated because he feels like people don't grasp just how unwell I am and it leaves him with no one to talk to about it. I guess I am partly responsible for that though because I rarely let people in our wider community see me for how sick I am. When I see them I put on my make up and slap a smile on my face. I guess unless they know they aren't being given the opportunity to offer to help are they? Having said that though Tony is pretty vocal about how things are. If only people ask.
I am excited to be writing my blog again and get back on youtube, my channel has had well over 10,000 views now and the feedback I get is fabulous so doing that again will give me a purpose and a lift. I just need to make sure I make it a priority.
I am so exhausted with chronic fatigue now that I had to stop and take a break but I am going to try to make time during the day so I don't have to do it at night.
I am still singing, will I ever stop?! Steve and I have the musical sketches for about 5 new songs which is really exciting and we have a gig on the 12th June that I am really looking forward too. Regardless of whether Tony had to carry my butt to a gig and sit me on a stool and tell me to sing I would do it. If I could I would preform once a week at least. I love singing to an audience. The energy you can absorb from an audience is magical. I come alive when I preform. I really do love it. It's my passion. I love hearing people's stories after the gig and to learn how songs I've written have impacted on their life. That really is one of the greatest gifts I can receive.
I guess that is all for today. I hereby promise I will be better at updating my blog again. Cross my heart.
Until then though. Many blessings to you and yours
Love x
There's so much that I want to say, that I feel like I need to say but let us just see what comes out tonight shall we? I've been suffering with depression for a few months now, it's not something I've decided to share with anyone really apart from a close few, it took an enormous amount of courage to admit that I was suffering with depression and the low days were indeed more then low days and something much darker had crept in. I had three days where I completely broke emotionally. I found myself on mothering sunday sat on the bathroom floor (lord knows how I got there) howling but silently howling because I didn't want Amelia-Rose to hear. At one point Tony came in and told me to get up and I said to him 'I don't know how' and I meant it. I literally didn't know how to get up off the floor. I had hit the bottom and I wasn't sure how to get back up again.
After that terrible day I knew I needed help. Even though I still retain the ability to look like myself on the outside and say all the right things and wear the right smile I knew that on the inside I had numbed to a point beyond recognition. I didn't know if I would ever see myself again.
Since that day I have been working on myself and I am trying to wrap my head back around the practise of mindfulness which has always been a great tool in the past. What I am is completely overwhelmed by the future. I don't have a joint that doesn't hurt anymore, I've lost the use of my colon already and now my bladder has stopped working (in that I can't go not that I leak!!) which makes me nervous about what may be next. Unfortunately I am back to throwing up whatever I eat which kinda sucks as I thought that would be ok again forever. I suppose it was more like a reprieve then a cure.
I volunteer up at the school two afternoons a week and help out at food bank every wednesday. Thursday I generally spend on the bed because the pain is so horrendous from the day before. I said to Tony this week from now on I am going to call Thursday 'Hurtsday' as I basically lose that day of the week.
Ok so lets talk pain. The pain is awful. I mean really awful. I have lost the ability to remember what it feels like to not be in pain and I know most likely I will go to the grave not remembering what it is like to be pain free. Generally I am able to manage the pain but it takes very little to tip into the 'not coping' camp. For instance if I have all my 'normal' pain but then get a headache (which I suffer from more and more. They are like migraines) then I will be struck down and stuck in bed. If I pop something that doesn't normally pop it will put me in bed overwhelmed by pain. Don't get me wrong I don't become this hysterical wailing woman, I refuse to begin to cry because of the pain because I know if I start I don't know how I will stop but I do become bed bound and my 'go to' techniques that I use to help with the pain stop working.
I am trying new meds but so far they aren't coming close to managing my pain. I wish the NHS would fund alternative therapies so we could at least try a different approach but we can't afford to fund these things.
Tony was never able to return to work after I got very sick in October last year, he is now my full time carer and at the moment we can't see a time when that will change although I like to think it won't be this way forever.
Tony becomes frustrated because he feels like people don't grasp just how unwell I am and it leaves him with no one to talk to about it. I guess I am partly responsible for that though because I rarely let people in our wider community see me for how sick I am. When I see them I put on my make up and slap a smile on my face. I guess unless they know they aren't being given the opportunity to offer to help are they? Having said that though Tony is pretty vocal about how things are. If only people ask.
I am excited to be writing my blog again and get back on youtube, my channel has had well over 10,000 views now and the feedback I get is fabulous so doing that again will give me a purpose and a lift. I just need to make sure I make it a priority.
I am so exhausted with chronic fatigue now that I had to stop and take a break but I am going to try to make time during the day so I don't have to do it at night.
I am still singing, will I ever stop?! Steve and I have the musical sketches for about 5 new songs which is really exciting and we have a gig on the 12th June that I am really looking forward too. Regardless of whether Tony had to carry my butt to a gig and sit me on a stool and tell me to sing I would do it. If I could I would preform once a week at least. I love singing to an audience. The energy you can absorb from an audience is magical. I come alive when I preform. I really do love it. It's my passion. I love hearing people's stories after the gig and to learn how songs I've written have impacted on their life. That really is one of the greatest gifts I can receive.
I guess that is all for today. I hereby promise I will be better at updating my blog again. Cross my heart.
Until then though. Many blessings to you and yours
Love x
Wednesday, 10 September 2014
Winning?
In my more tired moments I often ask myself 'Are you winning?' and sometimes a loud resounding voice in my head says 'NO' and I have to pause, and I have to remind the voice of everything I have achieved that day and hold out until I hear that "Gawd dammit yes you are!"- Fortunately I am a stubborn soul when it comes to my Hypermobility Syndrome (Elhers Danlos type 3) and will always wait out for it because I deserve it. You deserve it too.
I love being out of house, I'm like a child on a school trip breaking all the rules by smiling at everyone I see. My soul feels like it is flying ahead of me and my heart skips a few beats. It doesn't matter if it's the school run or a food shop at the local butchers for Tony's dinner I love being out.
I am the kind of person that wants to tell people how great they are, to tell them they are winning even if they don't feel like it. They are winning because they are out too. I wish people would take every moment as a victory and derive great pleasure from the small things. Trust me, it's the small things that you miss the most when you're living with chronic disease.
When I was in hospital I was 'sprung out' on mothers day by Tony and Amelia-Rose to go and sit in the outside courtyard. It was a beautiful day and I was blown over to bump into a woman that I know whose husband had just suffered a stroke. When I saw her I can't tell you how poorly he looked. He was in a wheelchair with slightly vacant eyes and was obviously really having to think about his speech. Being a wheelchair user myself I know how awful it is when someone talks over your head to the person pushing you so I made a real point of being introduced to him and talking as much as we could.
Well, let me tell you! The other day I had just come from my weekly sound bath (one of the things I do to naturally control my pain) to have a coffee with my Dad. As we left the shop I saw the lady in question with a man STOOD next to her (with just a single walking aid) with an obvious bubble of personality around him and a glint in his eye. BLOODY HELL I thought "HE WON". I had to hold back my tears and almost over whelming desire to stand up and hug him. I could not believe the transformation between the man I had seen just a few months ago and the man that stood before me. I told him he had made my week and that I literally couldn't contain my excitement to see him. (Yes, I am aware he probably thinks I am a crazy lady)
His race was his stroke. My race is my Hypermobility syndrome. We all have a race though. Maybe your race is raising young children, maybe it's your job, maybe it's a dream you're chasing. Whatever it is I implore you to ask yourself every now and again ''Am I winning?'' Then go beyond the first voice you hear.
I pray for you that the first answer you hear is a 'yes'. Explore that though. Why are you winning? What's making you feel like you are winning? How can you keep that going? What can you do to protect it?
If it's a no don't be too disheartened. Explore that too. What's going wrong? Do you need to slow down, listen to your body more? Seek a friend's advice? Is this feeling of not winning real or is it your initial response to everything? I believe in everyone. I know that sounds so corny but I do. I believe in the power of people.
I am proud to announce a victory along the way in my own race. A week ago I decided to stop taking my break through pain killer (which is actually stronger then morphine so I'm told) that I take when I have an especially painful pop or dislocation.
I thought I was in for a week of pure hell but I'm doing ok. The pain is insane and was very out of control sunday night and whilst I'm struggling with this new huge pain I am winning. I decided I was going to stop and I stopped (as the pain killers had a purpose I was not addicted, you become addicted when your pain decreases and you don't decrease your pain medications appropriately)
I've had to work extremely hard at being mindful and have fallen out of all my nice habits of being with online communities which I miss terribly and I know I will pick up as soon as I can but I have been given some sleeping tablets to help me sleep at the minute. They won't work for long, they never do which is why I then have to go through months of insomnia. I try to naturally control my sleep but since my operation in May every 6 weeks or so I will have a few nights of taking the sleeping tablets simply because I just need sleep.
It is working though, I am off the break through pain killers. I won.
An update
I have been so active during the day that I've actually lost my editing time and have fallen a little behind with my youtube channel (which has now had over 7000 views) but I am so determined to pick it back up again. I want to have a positive impact on the world and the comments I get on the videos from fellow sufferers are amazing. It's working. People are reporting finding HOPE in my videos.
My body may be weary and I think there's a few people around here who are in their 80's and in better shape then me but Lord, there's so much more to come and whilst my body is weary my soul is so very alive!
I'm in touch with a young woman who every now and again I get an overwhelming desire to get in touch with and often find my fingers know what to type better then I do! I am so sure there are huge things due to come to her in her life but she's struck down with Elhers Danlos and shares many of the same symptoms as me (food intolerance etc). It turns out whenever I message her she's normally in great need of comfort, she recently told me that she actually screen shots what I write to her for the times when she feels very low. Messages like that are my driving force at the minute.
I know that this ministry is very much in the hands of God but I do feel like I have found my calling. It's going to take a lot of time and a lot of spoons (only some people will get that! If you don't type 'the spoon theory' into youtube) but I see this chronic disease movement ahead of us where we will grow bigger and bigger until as many people as possible know about this disease and other equally horrible diseases and those suffering don't have to go into long explanations about the what feels like a billion symptoms.
It's coming and we will win. EDS and HMS are not running this show anymore.
Fact
I love being out of house, I'm like a child on a school trip breaking all the rules by smiling at everyone I see. My soul feels like it is flying ahead of me and my heart skips a few beats. It doesn't matter if it's the school run or a food shop at the local butchers for Tony's dinner I love being out.
I am the kind of person that wants to tell people how great they are, to tell them they are winning even if they don't feel like it. They are winning because they are out too. I wish people would take every moment as a victory and derive great pleasure from the small things. Trust me, it's the small things that you miss the most when you're living with chronic disease.
When I was in hospital I was 'sprung out' on mothers day by Tony and Amelia-Rose to go and sit in the outside courtyard. It was a beautiful day and I was blown over to bump into a woman that I know whose husband had just suffered a stroke. When I saw her I can't tell you how poorly he looked. He was in a wheelchair with slightly vacant eyes and was obviously really having to think about his speech. Being a wheelchair user myself I know how awful it is when someone talks over your head to the person pushing you so I made a real point of being introduced to him and talking as much as we could.
Well, let me tell you! The other day I had just come from my weekly sound bath (one of the things I do to naturally control my pain) to have a coffee with my Dad. As we left the shop I saw the lady in question with a man STOOD next to her (with just a single walking aid) with an obvious bubble of personality around him and a glint in his eye. BLOODY HELL I thought "HE WON". I had to hold back my tears and almost over whelming desire to stand up and hug him. I could not believe the transformation between the man I had seen just a few months ago and the man that stood before me. I told him he had made my week and that I literally couldn't contain my excitement to see him. (Yes, I am aware he probably thinks I am a crazy lady)
His race was his stroke. My race is my Hypermobility syndrome. We all have a race though. Maybe your race is raising young children, maybe it's your job, maybe it's a dream you're chasing. Whatever it is I implore you to ask yourself every now and again ''Am I winning?'' Then go beyond the first voice you hear.
I pray for you that the first answer you hear is a 'yes'. Explore that though. Why are you winning? What's making you feel like you are winning? How can you keep that going? What can you do to protect it?
If it's a no don't be too disheartened. Explore that too. What's going wrong? Do you need to slow down, listen to your body more? Seek a friend's advice? Is this feeling of not winning real or is it your initial response to everything? I believe in everyone. I know that sounds so corny but I do. I believe in the power of people.
I am proud to announce a victory along the way in my own race. A week ago I decided to stop taking my break through pain killer (which is actually stronger then morphine so I'm told) that I take when I have an especially painful pop or dislocation.
I thought I was in for a week of pure hell but I'm doing ok. The pain is insane and was very out of control sunday night and whilst I'm struggling with this new huge pain I am winning. I decided I was going to stop and I stopped (as the pain killers had a purpose I was not addicted, you become addicted when your pain decreases and you don't decrease your pain medications appropriately)
I've had to work extremely hard at being mindful and have fallen out of all my nice habits of being with online communities which I miss terribly and I know I will pick up as soon as I can but I have been given some sleeping tablets to help me sleep at the minute. They won't work for long, they never do which is why I then have to go through months of insomnia. I try to naturally control my sleep but since my operation in May every 6 weeks or so I will have a few nights of taking the sleeping tablets simply because I just need sleep.
It is working though, I am off the break through pain killers. I won.
An update
I have been so active during the day that I've actually lost my editing time and have fallen a little behind with my youtube channel (which has now had over 7000 views) but I am so determined to pick it back up again. I want to have a positive impact on the world and the comments I get on the videos from fellow sufferers are amazing. It's working. People are reporting finding HOPE in my videos.
My body may be weary and I think there's a few people around here who are in their 80's and in better shape then me but Lord, there's so much more to come and whilst my body is weary my soul is so very alive!
I'm in touch with a young woman who every now and again I get an overwhelming desire to get in touch with and often find my fingers know what to type better then I do! I am so sure there are huge things due to come to her in her life but she's struck down with Elhers Danlos and shares many of the same symptoms as me (food intolerance etc). It turns out whenever I message her she's normally in great need of comfort, she recently told me that she actually screen shots what I write to her for the times when she feels very low. Messages like that are my driving force at the minute.
I know that this ministry is very much in the hands of God but I do feel like I have found my calling. It's going to take a lot of time and a lot of spoons (only some people will get that! If you don't type 'the spoon theory' into youtube) but I see this chronic disease movement ahead of us where we will grow bigger and bigger until as many people as possible know about this disease and other equally horrible diseases and those suffering don't have to go into long explanations about the what feels like a billion symptoms.
It's coming and we will win. EDS and HMS are not running this show anymore.
Fact
Saturday, 30 August 2014
There's always one more...
Hello my lovely dears!! "WHERE HAVE YOU BEEN?" I hear you cry! Well the answer to that is, I have been having the most wonderful summer holiday with Amelia-Rose and have been throwing my energy in the evening into launching and building my YouTube channel.
I really feel like I have found my calling with my illness and the blog and YouTube channel, I feel like I am actually making a difference to the lives of other people living with chronic illnesses and hopefully raising awareness of HMS. There's so little on the web about what it's actually like to live with the disease day to day and when I first got diagnosed it's something that I really wanted to know.
I can't lie, it is hard being so honest with the world but I would be doing a disservice to everyone else that suffers with HMS if I didn't paint the whole picture. Innately I am a very positive person and my moto for the channel is 'Positively combating chronic illness' and that is my main goal in all of this however, I have to show every side of it no matter how hard that is for me personally.
Amelia-Rose goes back to school on Wednesday and I must admit I'm not ready to give her back yet! I know that a lot of parents have been itching for the new school year to begin for a good 5 weeks now but I definitely do not have my tent pitched in that camp! I am quite the opposite actually!
I thought it would get easier the second year but I actually feel more churned up this year then I did about her starting school! We are so incredibly blessed with the school that Amelia-Rose attends and she does so well at school but still, I do so love her company. I keep joking with her that I will be like the children you see at pre school clinging to their mummy's leg ''Don't go! Don't go!" She finds my fake desperation VERY funny! Of course, I am only joking though, I am so careful that all she sees from me about school is sheer excitement! I don't want her getting a complex about school again like last year after I came out of hospital.
When I reflect on the past 6 weeks I actually cannot believe how much we have done! Everyday has been an adventure and I am honestly so proud of myself for everything that I have done with Amelia-Rose. I love that I've been vlogging too so have footage to look back on and can remember every day.
It's been a beautiful summer and one I hope to hold on to forever. My memory is probably the worst it's ever been right now but I'm not letting that defeat me or get me down. That's what the vlogs are for. I can watch and remember through them. I tell you what, this new venture has been a huge blessing to me.
Tony and I sat and had a very serious chat about me starting a YouTube channel. I was nervous about what to share and how much to share, it's an incredibly big thing to put your life out there let me tell you but I just cannot shift this feeling that this is what I am meant to be doing. Tony was amazingly supportive and didn't have any of my concerns. He has been my champion with all of this! I also check with Amelia-Rose that she is happy with the footage before I post it and we're very careful not to give out any personal information like where exactly we live or our last name etc etc It's turned into a bit of a family holiday and is hilarious when Amelia-Rose makes off with the camera to film her own vlog!
Once Amelia-Rose is back at school I hope to get the balance back between the channel and the blog. At the minute I literally only have the time to film and edit (and even then I am editing sometimes still at 2-3am in the morning because I don't go on the laptop when Amelia-Rose is up) at the minute but when we get back into our routine I want to also find time to concentrate on my writing also.
I had a great catch up appointment with the lady I see at the pain clinic this week. I haven't seen her for a long time because I was having so many appointments we both felt like we could put our appointments on hold for now because sometimes i was having as many as 2 or 3 appointments a WEEK with various people.
Now things have cooled off a bit with London I will start seeing her a bit more often. It's just really nice to sit and talk for an hour with someone who really understand pain.
I told her about everything I have been doing to manage my pain and how much better I have become at pacing myself and she was so proud of me it was amazing! I told her all about my channel and the blog and she said how inspiring I am and what a great role model I am for other people living with chronic disease because I try so hard to still enjoy my life. It was really touching and has given me a real lift. It's nice sometimes to be told you're doing a good job. it was more then nice actually. It was pretty damn awesome.
Personally it's something I do a lot for other people. I am a great believer in affirming people and will always try to encourage and cheer on those around me, even if I don't know them that well. I think the world would be a beautiful place if we all spent more time building each other up and less time tearing each other down. I know that sounds a little disney land but it's true. Pause and think for a minute, what does is actually cost you to build someone up? Money? Nope Going out of your way? Nope. Does it hurt you? Nope. Time? Maybe a little but not much. Encouraging and being someone's champion is actually a gift that you can give for free.
I'm carrying a lot of burdens at the minute outside of my bubble and I must admit there was a day last week when I really thought I had had my fill. I was ready to go get in the car drive to a field and have a really good scream! It's odd isn't it how you can have one part of your life so together and so happy and yet the other part is just, well, too much. You feel like the snowman glued in a snow globe. You can't move or protect yourself from everything that is swirling, fluttering and falling down around you. You just have to stand there with a top hat and a carrot for a nose praying your hat doesn't blow away or your nose drop off.
So you see, going into that appointment and being told what a great job I was doing really did build me up, it gave me new ground to stand on. It made me believe that actually I really am doing my best and I really am seeing results (as appose to it all being in my mind!) and that led to me today almost, re finding my faith.
I have never stopped believing in God. Ever. I've never stopped talking to him but since March my prayers have pretty much gone "I don't know how to talk to you anymore. I don't know what to say. I just.... I dunno. There's no words"
I said to my friend "It's not that I don't believe or I can't see him working in my life because I do and I can but I can't feel him right now. You know, that feeling of the spirit whether it be calm or bursting out of you. It's gone"
Then today when I was out shopping with Amelia-Rose and Tony I got too cold and had to come home. We were actually almost done anyway and I was going to buy a cup of coffee but I said to Tony I might as well just go home and make one (as I was going to take the coffee home anyway) so they went off to the tool shop and to the toy store and I came out and made myself 'proper coffee' (I will admit I am a bit of a coffee snob at home. I like proper coffee) I went and sat down with the paper and thought to myself '"ooo I could have some telly time!"
The tv was still tuned in to what Tony had been watching the night before and as I began to channel flick I happened across one of the christian channels. I watch preachers online but have never ever watched any kind of church on the t.v before.
Well, within minutes I was sobbing huge big uncontrollable tears all down my face because honestly it was like the preacher was talking just to me.I guess, like God was talking just to me. It gave me shivers and goose bumps and I felt the most connected to the Lord that I have done in months.
I actually ended up recording it and am going to share some of the scripture here. I really need to sort my walk with God out and I feel like now is probably the time. I need to figure out how to fit together now that I've changed so much and my life had changed so much because I do want to be a beacon of his light. Every single time I perform on stage I always say the same prayer...
I really feel like I have found my calling with my illness and the blog and YouTube channel, I feel like I am actually making a difference to the lives of other people living with chronic illnesses and hopefully raising awareness of HMS. There's so little on the web about what it's actually like to live with the disease day to day and when I first got diagnosed it's something that I really wanted to know.
I can't lie, it is hard being so honest with the world but I would be doing a disservice to everyone else that suffers with HMS if I didn't paint the whole picture. Innately I am a very positive person and my moto for the channel is 'Positively combating chronic illness' and that is my main goal in all of this however, I have to show every side of it no matter how hard that is for me personally.
Amelia-Rose goes back to school on Wednesday and I must admit I'm not ready to give her back yet! I know that a lot of parents have been itching for the new school year to begin for a good 5 weeks now but I definitely do not have my tent pitched in that camp! I am quite the opposite actually!
I thought it would get easier the second year but I actually feel more churned up this year then I did about her starting school! We are so incredibly blessed with the school that Amelia-Rose attends and she does so well at school but still, I do so love her company. I keep joking with her that I will be like the children you see at pre school clinging to their mummy's leg ''Don't go! Don't go!" She finds my fake desperation VERY funny! Of course, I am only joking though, I am so careful that all she sees from me about school is sheer excitement! I don't want her getting a complex about school again like last year after I came out of hospital.
When I reflect on the past 6 weeks I actually cannot believe how much we have done! Everyday has been an adventure and I am honestly so proud of myself for everything that I have done with Amelia-Rose. I love that I've been vlogging too so have footage to look back on and can remember every day.
It's been a beautiful summer and one I hope to hold on to forever. My memory is probably the worst it's ever been right now but I'm not letting that defeat me or get me down. That's what the vlogs are for. I can watch and remember through them. I tell you what, this new venture has been a huge blessing to me.
Tony and I sat and had a very serious chat about me starting a YouTube channel. I was nervous about what to share and how much to share, it's an incredibly big thing to put your life out there let me tell you but I just cannot shift this feeling that this is what I am meant to be doing. Tony was amazingly supportive and didn't have any of my concerns. He has been my champion with all of this! I also check with Amelia-Rose that she is happy with the footage before I post it and we're very careful not to give out any personal information like where exactly we live or our last name etc etc It's turned into a bit of a family holiday and is hilarious when Amelia-Rose makes off with the camera to film her own vlog!
Once Amelia-Rose is back at school I hope to get the balance back between the channel and the blog. At the minute I literally only have the time to film and edit (and even then I am editing sometimes still at 2-3am in the morning because I don't go on the laptop when Amelia-Rose is up) at the minute but when we get back into our routine I want to also find time to concentrate on my writing also.
I had a great catch up appointment with the lady I see at the pain clinic this week. I haven't seen her for a long time because I was having so many appointments we both felt like we could put our appointments on hold for now because sometimes i was having as many as 2 or 3 appointments a WEEK with various people.
Now things have cooled off a bit with London I will start seeing her a bit more often. It's just really nice to sit and talk for an hour with someone who really understand pain.
I told her about everything I have been doing to manage my pain and how much better I have become at pacing myself and she was so proud of me it was amazing! I told her all about my channel and the blog and she said how inspiring I am and what a great role model I am for other people living with chronic disease because I try so hard to still enjoy my life. It was really touching and has given me a real lift. It's nice sometimes to be told you're doing a good job. it was more then nice actually. It was pretty damn awesome.
Personally it's something I do a lot for other people. I am a great believer in affirming people and will always try to encourage and cheer on those around me, even if I don't know them that well. I think the world would be a beautiful place if we all spent more time building each other up and less time tearing each other down. I know that sounds a little disney land but it's true. Pause and think for a minute, what does is actually cost you to build someone up? Money? Nope Going out of your way? Nope. Does it hurt you? Nope. Time? Maybe a little but not much. Encouraging and being someone's champion is actually a gift that you can give for free.
I'm carrying a lot of burdens at the minute outside of my bubble and I must admit there was a day last week when I really thought I had had my fill. I was ready to go get in the car drive to a field and have a really good scream! It's odd isn't it how you can have one part of your life so together and so happy and yet the other part is just, well, too much. You feel like the snowman glued in a snow globe. You can't move or protect yourself from everything that is swirling, fluttering and falling down around you. You just have to stand there with a top hat and a carrot for a nose praying your hat doesn't blow away or your nose drop off.
So you see, going into that appointment and being told what a great job I was doing really did build me up, it gave me new ground to stand on. It made me believe that actually I really am doing my best and I really am seeing results (as appose to it all being in my mind!) and that led to me today almost, re finding my faith.
I have never stopped believing in God. Ever. I've never stopped talking to him but since March my prayers have pretty much gone "I don't know how to talk to you anymore. I don't know what to say. I just.... I dunno. There's no words"
I said to my friend "It's not that I don't believe or I can't see him working in my life because I do and I can but I can't feel him right now. You know, that feeling of the spirit whether it be calm or bursting out of you. It's gone"
Then today when I was out shopping with Amelia-Rose and Tony I got too cold and had to come home. We were actually almost done anyway and I was going to buy a cup of coffee but I said to Tony I might as well just go home and make one (as I was going to take the coffee home anyway) so they went off to the tool shop and to the toy store and I came out and made myself 'proper coffee' (I will admit I am a bit of a coffee snob at home. I like proper coffee) I went and sat down with the paper and thought to myself '"ooo I could have some telly time!"
The tv was still tuned in to what Tony had been watching the night before and as I began to channel flick I happened across one of the christian channels. I watch preachers online but have never ever watched any kind of church on the t.v before.
Well, within minutes I was sobbing huge big uncontrollable tears all down my face because honestly it was like the preacher was talking just to me.I guess, like God was talking just to me. It gave me shivers and goose bumps and I felt the most connected to the Lord that I have done in months.
I actually ended up recording it and am going to share some of the scripture here. I really need to sort my walk with God out and I feel like now is probably the time. I need to figure out how to fit together now that I've changed so much and my life had changed so much because I do want to be a beacon of his light. Every single time I perform on stage I always say the same prayer...
"Lord let me a beacon of your light.
Let every word that comes from my mouth
be the word you want to be heard.
My voice is of you and I thank you
for my blessing.
Lord I give this evening over to you.
Let me shine for you"
And it occurred to me today that maybe I need to say that prayer everyday. The day is my stage, the world is the audience. Maybe I need to give myself over to him every day and renew the bond that we have so that I can go forward and be the beacon that I always wanted to be.
Catch up soon guys
Love ya
x x
p.s (I am putting this up now to get it out there and will proof read and edit it tomorrow!)
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