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.