Foggy's "Invisible Illness" Support
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Scariest few days !

Hi, I'm Jules (Julie),

About 5 weeks ago I saw my dr as both of my feet were incredibly swollen and painful on the tops. I naturally thought it was due to the arthritis. Dr.B said it looked like water retention, to walk around and keep them raised every few hours. Last Monday I had to see a locum.He pressed my calves, no pain. Poked my very puffy shins which were tender. I went to take my trainers off, he said "no need, just walk around as much as you can"

My feet are tiny, a 2-3. My feet by this point, the ones he didn't need to see were in my husbands socks and a size 6 trainer ! Husband's socks were still tight enough to mark my legs within minutes.

Hubby said to go back to DrBg again.

So, 8am Friday just gone I showed him all the photos, taken all through the day, he checked my legs and feet then asked me to see the surgery nurse for blood tests.

6pm that evening the phone rang. Dr.B must have been checking his emails before going home. He had an urgent from the path lab. My d-timer test shows positive. I have dvt in both legs with it being the weekend, specialists don't work. He said any other time, he's have me straight to hospital. He said he'd phone back first thing Monday ( which he did) but hubby and I had this bombshell to handle all weekend.

8.30am he phoned Monday. Hospital would see me as soon as I could get there.

A scan couldn't be done till Wednesday so they'd give me an injection ( not heparin or warfarin, newer).

Monday was in the left side of the stomache,, Tuesday the right side. Yesterday the scan.

Scared witless was an understatement by this point.

Thankfully I got the all clear.

Glad I have blonde hair, it doesn't show the grey that scare caused. So what next ? No idea really.

I'd been booked in on a patient referral for a lumbar scan, I dislodge discs every time I lay flat so I've been sleeping on the sofa for several months now.

Dr.B told me to start phoning the surgery every morning starting Monday for the results, as soon as they are in, he wants to see me asap and we'd go from there.

I phoned the DWP to let them know my condition had worsened, they said I had to refill out that huge form and include the changes. I was then told something i didn't expect.

Firstly, (am currently on standard PIP) that ( in her words]

From what you're saying, you should be getting mobility allowance too..

Then said : your money could go up, down or stay the same.

I asked " my condition is worse, why would it go down?

She replied that the person who reviews my claim may look at it from a different way to how the initial person did and may feel you don't qualify !!

How ridiculous !!

I've had the scariest few days since June 2014 when my husband had a heart attack and then went into cardiac arrest, and now this.

I really don't know what to think or say about it all now,



2 Replies

The system is terrible and designed to put people off. What an ordeal for you.


Hi Jules, What a desperate time you've had, all I can say is tale a few deep breaths and look for some positive things that have happened, concentrate on them for a bit.

Then get the form and take a few days to fill it out, I'm not mad, I just know how tedious filling these things in are. They are full of repetition, you'll feel like you've already answered a similar question so just answer it along the lines of they need more info and give it.

I've filled in loads of this type of thing and all I can say is don't be proud! Give them all the relevant info, as it it was your worst days symptoms, remember the pain, mobility problems, even incontinence problems if that applies (it applies to more of us that you think), also if you need the thermostat higher because your pain is worse when you're cold, and put it in the form. you can always add another sheet of paper to ensure you put it down just the way it is.

Hope it works well for you, think positive, always. Val 🙂


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