Relieved, but exhausted, like two filleted fish, we have collapsed in a squishy heap. So, here at the elephant house, we are really 'PEM-med-up', hence the radio silence from the Blog in the last weeks.
PEM stands for Post- Exersional (physical OR mental, OR emotional activity) Malaise. The inevitable flare up of PEM, after doing...well, ANYTHING, delivers a combination of flu, pain, emotional sensitivity, and a flare-up of any other chronic conditions/allergies/mental health issues you might have. Yes- it's a party in your nervous system!
If activity is the meal at a restaurant you can't afford- PEM is the colossal bill you receive a few minutes, hours or even days or weeks later! It is even more galling when your energy has been drained by something that was unnecessary.
The advice I can offer you if you are applying for any benefit because of ill health, is simply :
1) Do not apply without getting professional help. The CAB offer a free service ( UK) and have been amazingly helpful including offering us a volunteer who attended court with us and was well briefed on the case. ME Association produces a series of leaflets, as well as having a helpline. For more information on specifically on how to fill out sections of the benefit forms if you have ME:http://www.meassociation.org.uk/shop/benefits-leaflets/
Benefits & Work https://www.benefitsandwork.co.uk/ Provide a huge range of resources. You have to pay an annual subscription for most of them, but there is no other organisation that can provide as much up to date information. B&W was the organisation that the majority of people recommended to me. There are other charities that will help you fill out forms, appeal etc. It would be naïve to think deserving a benefit will get you that benefit without a degree of hassle... and with someone else dealing with the paperwork, they can hassle on your behalf, taking some of the stress from off your shoulders...
2) ...Speaking of which....you will NEED to manage the stress which comes with this process. Being chronically ill is hard enough at the best of times ( which it rarely is), but the stress during the benefit applications can push you beyond your limits. Sadly, the system demands a marathon not a sprint, so you need to pace yourself. I had more than enough evidence I needed from the get-go, but nevertheless I still had to go through every tier of the application and appeal process.
(NB: I will be blogging about managing your mental health alongside chronic conditions, in the near future.)
It will take a while to get over the L--O--N--G process we have been through...for over 18 months it has ripped the energy out of me, leaving me with worsened health and lower energy, so I will stop now, and leave you with some candid shots of me in the last months.
|These sheets are filthy!!|
|It might be sunny, but I need to stay in....|
|We did it! Now we can REST!!!|
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