Final Video blog showing my journey to 31km!

Day 5 Fundraising done!

So I have done it- I have completed 31km in 5 days for Lifeblood, the Thrombosis Charity.
I am so pleased to have done it, I am super tired. Here's how I did it:


Monday
Cycling 6km
Running 1km
Swimming 1km
Total 8km


Tuesday
Cycling 5km
Running 1km
Total 6km


Wednesday
Cycling 5km
Running 1km
Total 6km


Thursday
Cycling 5km
Running 1km
Swimming 1km
Total 7km


Friday
Cycling 3km
Running 1km
Total 4km




I am off tomorrow to Kefalonia for a long weekend break to see my cousin, a well deserved rest I think.  When I get back I am going to edit together my video blogs into one to show my journey and try to get some more sponsorship. Thank you to all those who have sponsored me so far.


If you are able to give anything, even just a £1 please please go to my page, www.justgiving.com/johnsonkatherineelizabeth.

Day 4 27km done! me swimming & everything!

So it is the end of day 4, and I have covered 27km of my target 31km in 5days for National Thrombosis Week, for Lifeblood.


Today I have been overwhelmed by the generosity of people, people who I have never met, who don't know me, he know me only as James' partner. Thankyou, Thankyou, Thankyou. The money you are donating will help Lifeblood to continue to do the amazing work raising awareness of Thrombosis. This is just the beginning for me, I am so proud that I have been able to achieve this, I know I haven't finished yet, but I also know that I will. When I was in the hospital, when I was in the wheelchair I never imagined that I would be able to cycle, run, swim, so that I am doing it one year on is amazing.


I am going to be setting up Thrombosis Support, an organization that works primarily to support those affected by Thrombosis, emotionally, factually and financially. That is the next project, there will I am sure be more fundraising to come for that, and I have certainly proved this week that I am able to do something. I have set up a support my blog tab, at the top of this blog, if you are able to give something, I would be most grateful. The next step for Thrombosis Support is the website & forum and this costs. 


Please help me, help you, help others, help me


Thanks for reading

Day 3- Tired, but still powering through

So I have just got back from the gym, and I have done 6km today so am still on target for my 31km in 5 day challenge.


Whilst in the gym I was doing my strength exercises,stretching and listening to Jessie J 'Big White Room', it brought back lots of memories of being in hospital, of laying in the hospital bed in so much pain, not being able to breathe, not being able to walk, not being able to be me.


I have come on so far from those days, and I can't even believe it was me, it feels so unreal. For any of you who know me, and saw me in that hospital bed, or pushed me in my wheelchair, who helped me try to begin to walk again, who have been the support for my leg when I have needed to elevate it, look at where I am now, please help me to give back to Lifeblood so this doesn't happen to someone else. DVT's & PE's are preventable and treatable, I am lucky I am sill here, so many people don't get that chance. For those of you who don't know me, and are reading this blog, firstly thankyou. I am just one person trying to give something back. This week is raising money for Lifeblood, moving forward I want give support to those affected by thrombosis. If you have been affected by thrombosis please contact me, tell me your story, tell me what you need, what you think will help. I am full of ideas, and I want to make these a reality.


Help me, help you, help others, help me..................

NTW- Day Two Fundraising

So it is 22:40 I have recently got in from teaching and it is safe to say I am knackered! I started off my day in the gym and did 5km cycling & 1km running, so I have done my goal of 6km today horray!! In total I have done 14km of my 31km target, which isn't bad on only day two.  After my gym session I was in the office for a bit then headed home for some food, and leg rest before going to teaching. I was sat with my older class today and told them briefly about what I am doing and about what has happened to me in the last year and half, their faces really showed the enormity of it. These children are between 15 & 18, and I don't think any of them knew about thrombosis, what it was, how it can kill you and how quickly it can come on.  I wasn't trying to scare them, and I think they know that, it is just about awareness, we spoke about Lifeblood's latest campaign and it felt good that I was able to have a really honest conversation with these children and hopefully they will take that on and maybe tell others.  I personally think the next challenge is making young people more aware of thrombosis.  For so long it has been seen as something you get if your old and can't move, or if you go on planes alot. It isn't, anyone can get a bloodclot, healthy, active, young, old, anyone, and people need to be more aware of it, and to stop it, and if it happens, to treat it and keep going!

Please, please go to my page www.justgiving.com/johnsonkatherineelizabeth and give something, anything, whatever you can. 

Right tomorrow at least 6km!

National Thrombosis Week- Fundraising Day 1- done!

So I have done it, I have completed day one of my fundraising for Lifeblood, I covered 8km today so am just over 25% of the way there to my goal of 31km in 5 days. It is safe to say I am pretty knackered, however on a positive note my leg is feeling pretty good. This morning the PTS was really bad and my leg had swollen up by the time I got out of bed went to the toilet and went to the kitchen, however it is now feeling much better after a day with quite a lot of exercising, so thats good.


I feel really positive that I am starting my fundraising for Lifeblood, and even though I ultimately want to start my own charity, I am so grateful for everything Lifeblood does and it feels good to be able to give back.  I only hope that in 10 years time when the Thrombosis Support Charity is working to support those affected by Thrombosis, I am able to thank people for fundraising for me, and that the charity is able to help those in need. 


Thankyou again for reading my blog, please pass it on, go to www.justgiving.com/johnsonkatherineelizabeth and give whatever you can.


Have a fab evening


x

Fundraising Day 1

National Thrombosis Awareness Week- Day 1

So it's day one of my fundraising & oh what a busy day it's been- I've been tackling iMovie trying to make a fundraising clip & hopefully I can upload it later. I got to the gym & managed 6km on the bike & 1 km running, quite impressive for me, especially as this time last year I was in a wheelchair- I am hoping to to 1km swimming later. Check out my video and my page www.justgiving.com/johnsonkatherineelizabeth

What's it all about anyway??

So I felt like I wanted to really put it out there, what this blog, the subsequent forum and website, and my whole thinking behind Thrombosis Support is. I feel like I have been boring you all with the DWP saga, and whilst I will go back to it (YAWN) today is about other things.


I want to create a charity/organisation/whatever you want to call it, that works primarily to support those who have been affected by Thrombosis. You may have had a DVT, PE, have PTS, or you may have been diagnosed with a Thrombophilia. You may have be one of the unlucky ones who has had a loved one taken from you due to thrombosis, or you may be someone who knows someone affected by thrombosis and want to help them, however you have been affected, I want Thrombosis Support to be able to help. 


I first had thoughts of a need to set something up when I myself was struggling to find support, and really come to terms with what had happened to me. I had gone from being a relatively healthy young woman, to someone who was either in hospital or going to clinic every week, sometimes twice a week and well who was generally quite unwell. 


As I have said before when the thrombosis hit, it was like a wave crashing over me, and everything changed.


The first thing I have set up is this blog, thrombosis support, I thank you all for reading it, re-posting, re-tweeting, following & telling others about it, please please keep doing so. I will be using this blog to share my experiences with thrombosis, and also my ideas for the future of thrombosis support, I welcome your feedback & comments. I want thrombosis support to be what people affected by thrombosis need, so do get in touch and let your voice be heard. 


The second thing is the Thrombosis Support Facebook group, search for it on facebook and get involved. 


The third thing I am working on is the Thrombosis Support forum, where people can chat with others about their experiences, gain some support from like minded people and be able to search through topics, as the issue they are having someone may have had before.


The final thing is the website- fundamentally I want the website to be able have all things support. Information about what thrombosis is, information about how to get it tested, treatment. Information about if thrombosis does happen to you what to do next, how to deal with adjusting to everyday life, where you can purchase stockings, support aids. I would like to set up support groups which can be advertised on the website, be able to offer different types of therapy, advertise fundraising events, offer advise on what benefits you may be entitled to and offer support grants if you are struggle with the financially implications of having a thrombosis.  The list goes on and I welcome any input from other suffers of what they would like Thrombosis Support to have. 


I am in the process of setting up Thrombosis Support as a non-profit organisation in order to be able to begin fundraising for it, because ultimately while I can do some of the above without funds, I need help to set this up. I know that there is a need and a want for a charity for thrombosis suffers and those affected by thrombosis, to support their life post thrombosis and make that adjustment a little easier. In the interim I have set up a donation tab on this blog where you can donate whatever you feel you can, I gratefully receive any help.


As many of us know there is one charity out there in the UK, dedicated to promoting awareness of thrombosis within the medical profession & publicly.Lifeblood


When I first came out of hospital Lifeblood, where a tremendous help, they gave me information about my condition, and showed me that I wasn't alone. Anyone who wants more information about thrombosis awareness should go to their website.

I feel like I want to give back to lifeblood and as such am doing some fundraising for them in national thrombosis week. Please check out my just giving page for all the information:


http://www.justgiving.com/johnsonkatherineelizabeth







Right I think that is quite enough for now- thankyou again for reading and please spread the word.


xx

DWP the story continues......

So, after James & I were refused Disability Living Allowance & Carer's Allowance, we just carried on, I was to ill at this stage to fight it, so we just powered through, living off James' wages and the Employment Support Allowance of £71 a week.


In January I started back at the office where I had previously worked full time. I was unable to do the job I did before due to the PTS, and still being a bit wobbly on my leg due the knee surgery, so we had decided it would be a desk job helping out the other members of staff, and I would work on reduced hours, with the hope to increase these in February. 


Ever the optimist I started back 10-5, they put me in a stool to elevate my leg, unfortunately it couldn't go any higher than 90 degrees, but hey it was better than nothing. In my second week back at work I ended up back in A&E my leg was so swollen and painful and the swelling wouldn't go down, I also felt a little breathless. 


I still remember going into the office the day after my leg had ballooned, just pretending it was fine, ignoring the pain.  I didn't want to go back there, after months of being in and out of hospital I had had enough, I didn't want to entertain the fact that I may have another clot, so just tried to ignore it, to push it away. Why did I have to go through this again?


I was scared, scared that it may be another clot, scared that it may not and this was just the way it was going to be, constantly worried that the pain I am having may kill me, or may just be pain from PTS. A daily paranoier .


I went to the hospital, I was in A&E for I think around 7 hours, blood tests, scans, lines in, lines out, was this really happening again?


Thankfully it wasn't another DVT, but a massive wake-up call that I have to listen to my body. The doctor there explained it really well,' you have PTS, which means the valves in your leg where the clots were are permanently damaged and won't let the blood flow normally, if you sit for too long your blood builds up where it can't get past the blockage and your leg swells, if you continue to do this, and don't elevate your leg, or keep it active, the blood has nowhere else to go and it will clot' Add to that the fact I have Factor V Leiden and Protein C Deficiency, and have now been taken off warfarin as the negatives out-way the positives, it is safe to say that wearing compression stockings, not sitting or standing for too long and keeping my leg active or elevated are pretty important.


So when I was called in to have a work assessment by ATOS for the DWP, and they decided I did not have limited capability for work, I was, well, am livid. 


I revised my working hours and started doing two days a week 4 hours, then 3 days and now 4. For someone who used to work full-time in the office as well as nannying and doing photoshoots, to now only be able to cope with 4 hours, 4 days a week, is , well, frustrating. And even doing only these few hours I am in pain, I get up every 30 mins or so to walk around, I go home and my leg is swollen and painful, but I want to work so I just suck it up.  I received the letter from the DWP telling me that my Employment Support Allowance was stopping as I no longer had limited capability for work, and I was now not entitled to any help for them. I felt deflated, how was it that now, due to no fault of my own I can't work full time, and my doctors have told me I will always have PTS, and thats it, no help. I want to work, however I want to be safe, I don't want to end up back in hospital again. How is that fair to go from earning a full-time salary to not, and not having any help to subsidise that. Isn't that what we pay national insurance for? So that if through illness we can't work to full capacity we have insurance? My daily spending hasn't gone down because of my medical condition, if anything it has gone up! Surgical stockings, physio, using more taxis etc. 


I felt let down & empty, oh well, I guess I'll just have to cope.


No, what they are saying is not true, so I wrote an appeal & I wrote to my local MP. I will accepted a decision based on truth & facts, but this wasn't, and I will fight it.

The Department of Work & Pensions, where it all began

So I don't know whether I really want to bore you all with the ins and outs of my battle with the department of work and pensions, so I will just give you a little over view to get you up to speed as it were on where I am at, this blog will be stage one!


When I got the clots in my leg and on my lung, everything changed.


Even though I was recovering from knee surgery I was doing ok, I was independent, well some might say stubborn, and would do things for myself whilst balancing on crutches.


When the blood clots hit, a kind of wave crashed over me and I couldn't do anything. I couldn't place my leg down on the ground without crying in pain, the throbbing in my leg was so intense and no amount of painkillers seemed to make it go away. I couldn't breathe, wow, I couldn't breathe, just typing that brings back so many horrible memories. I'd get out of breath just trying to get from my bed to the bathroom. I couldn't wash unaided, my leg would swell up so quickly, and I'd get so out of breath everything was an effort.


When I was first diagnosed and discharged from hospital I was still living with Luke, he and Mike were a massive support, as much as they could do for me they did. But James, my James was there, he would work from my flat, changed his meetings, come to the hospital with me, as much as he could he did, he was pretty much, well no he was, my carer. He helped me get dressed, he helped me wash, get me in and out of the shower, the bath, helped me wash my hair, got me food, helped me into bed, helped me start my physio, everything. I eventually got to the point where much as I wanted to stay living with Luke and have my independence, not only did I need 24-7 care I couldn't afford to stay living at Luke's. I didn't even try to apply for housing benefit and council tax benefit.  The thought of trying to fill out all those forms, when I was struggling to breathe was too much to bear, as it was I was spending all my efforts documenting everything that happened at the hospital that got me to where I was, but that and the subsequent complaint is for another blog.


I moved in with James at the beginning of July, and we just kept muddling through. Still unable to work, we were advised that I was now disabled and that we should apply for disability living allowance and carers allowance. Benefits hadn't really crossed my mind, I was just trying to get through each day, try and keep my INR stable and just stay positive. So the thought of considering myself disabled was odd, totally random and well laughable. I am 31 years old how can I be disabled?


Disabled-

Adjective:

(of a person) Having a physical or mental condition that limits movements, senses, or activities.

Well I guess this is true to me and I am disabled, and so James and I got the forms and filled it all out, the very long, laborious forms we filled them all out told the truth and sent them back. Feeling positive and hopeful that yes all the questions we answered did relate to us and well great we actually can get some help getting through this, wow if only we had known this before, why didn't the hospital make us aware of this? Oh well better late than never.

Wrong, the response I got was, 

Although you have difficulty, you don't need help to get in and out of bed, use a bath or shower, dress or undress, get up and down stairs, move about. You are not entitled to help. The next day I fell when I was in the bath, the bruise was massive. But of course I didn't need help...............................