Sunday, 12 August 2012

Times When M.E. Sucks

This is more a personal update post. I want to give an example of how M.E. can drastically alter and ruin people's lives.

The past four weeks have been bad for me. I had to give up another perfectly good job because of exhaustion. I made it to the 2-year mark this time. I was determined to soldier on for another six months, mainly for the extra salary boost, but I just couldn't do it. Actually, it's really been a lack of sleep that's been the true crippling agent of it all. Generally, for the past two years, I've been getting just one or two hours of sleep per night. The only exception was the past winter, in which in extreme cold temperatures, I had the first full nights of sleep in around a decade. It's just been an unsustainable deprivation, and I finally cracked of insomnia-induced exhaustion in July. Overall, my M.E. symptoms are not as bad as compared to my worst period back in 2006-2007. I believe it to be the strict pacing and complete giving up of exercise that has prevented my M.E. from getting as bad as it was in 2006-2007, but this latest crash shows that I am still far from perfect.

Giving up another job has been truly devastating. I was so lucky to get the job I had, and there'll be no way to get it back again. I literally gave up everything - my room, my social sphere, my lifestyle, my routine, my income, and my sense of purpose. I'm not sure which one of those losses has hit me worst of all. I even had to leave my juicer behind, which now without a job, I can't afford to get a new one. I have had to move again, first to another country, then into a backpacker hostel, then finally with a previous landlord. Ironically, although the need of giving up work was to get rested, I've been busier than ever, and all because I ironically need to get myself a new job again.

As everyone everywhere knows, the cost of living is really high. Just for basic rent and food, you need around 1000 pounds (US$2000) per month in the UK. I've read of some M.E. sufferers resorting to living in their cars, and I'm now thinking about that as an option if I can't get back into work within the next 12 months. The problem is that I don't even drive, and without work, it's quite prohibitive to afford driving lessons, as well as the fact that my M.E. condition wouldn't make it feasible to be able to handle driving. There is just too much of a cognitive capacity needed for driving, as well as the fact that physically handling a steering wheel is too draining. I also find that I can't travel too well, even as a passenger, as the stopping and starting motion of most vehicles proves to be a trigger for my M.E. symptoms. However, investing in the lessons for the licence could be a smart move once I head toward a critical financial level, as there is no way to afford rental costs if indefinitely without an income. I really can't see how I would survive long on the streets in the UK with the climate being so cold and wet, and having constant danger from other people. I could imagine little worse than living outside in this type of environment. On the other hand, when you are at the state of complete exhaustion, I also feel a kind of state of surrender in that if homelessness happens, then it happens, as I am literally powerless to change it.

I looked into health-related benefit entitlements for people out of work, currently called ESA in the UK, and for M.E. sufferers, they seem next-to-impossible to claim. The application form is points based. The focus of the form questions centers around three key areas - whether you are likely to pose a risk to yourself or to others in the workplace; whether you can press a telephone button or not; whether you can stand up or sit down unaided. For most M.E. sufferers, we don't fit into these categories in terms of how we are affected, thus would score very minimal points on the form.

I really thought I could get some help from a UK doctor, but so far, I've just hit a dead end, and I'm back to trying to help myself. As wonderful as a free national health service is, the resources are just too stretched to have time to deal with complex cases that are M.E. However, I had done all the diagnoses myself - depleted vitamins, minerals, DHEA, and insomnia. These are the areas I specifically need help with and have concrete test evidence to back up my issues. But the doctors here don't want to know. I was encouraged to take a complete blood count test, and the doctor just focused on areas that were not my priority. UK doctors seem to have blood-sugar level almost as a sole priority for review. It's almost like they are willing for a person to show up with diabetes. I was even advised to take a smear test, as that "could be harboring something that is causing my symptoms." Does cervical cancer cause you to sleep for only one hour per night? I don't think so. What on earth is one to do with such 'help' responses? There are some private options that I would like to try, but it comes back down to not having an income to cover these costs, so I've truly reached a dead end for now.

I would love to have my life back as it was even just a few months ago. However, you cannot turn back time. Instead, you have to hope that something brighter will materialize. It is a hope I am clinging on to, although I really wish that I could be close to retirement age, as then I wouldn't have such a marathon stretch of time in front of me to fill with potentially another 10 changes of jobs if the past is anything to go by. Can you imagine wanting to fast forward another quarter of a century because you have no energy to keep going through the crash and burn cycle? That is what I so desperately wish at this point in time. I've made it to a couple of interviews already, but without success. I failed an interview for a call center because my voice cuts out after talking for about five minutes. This is the result of acid reflux having burned my throat and vocal chords one night back in 2008. 

This is all an invisible illness to everyone else. One person said last week I should just eat more and I'll get better. Another asked me if I had any vacation plans even though I told them that I have zero energy to live like other people. They just don't understand. They cannot see this complete lack of energy that makes every task feel like a herculean effort, and which has totally ruined my life.

My biggest wish is to just be able to sleep through the night, night after night. I'm sure that would solve a lot of my energy problems. I'm starting out on increasing my protein intake, as I've now read two sources that suggest that it's a hypoglycaemic drop from around 1am to 3am that stimulates overactivity in the adrenal glands and liver to compensate for this drop. It's proving quite hard to reach the suggested intake of 1 gram per every kilo of body weight, and I'm relying a lot on nuts and seed bars to achieve this quantity, but I know I'm still falling short. Purchasing meats and fish is quite expensive as well as not having enough energy to labor in the kitchen for any length of time.

I feel so helpless right now, but here's to hoping things will get better.

1 comment:

  1. Have you heard of or tried Zeolite?

    It might be a missing step, not allowing your body to heal.