Gifting on a Budget

Posted: December 6, 2012 in Uncategorized

Those of us with Chronic Fatigue Syndrome are on a budget, both financially and with our energy. I have neither the financial resources I once had nor the stamina. That makes Christmas especially difficult.

I have four sons and fifteen granchildren who I would love to be extravagant for but it’s not in the cards this year. I’ve decided to have a homemade Christmas this year but that brings another issue up – my energy levels are limited as I’m sure yours are. The energy it takes to bake cookies or make candy is almost nonexistent. It’s difficult to stand for any length of time.

I’ve gone to the Dollar Tree and purchased holiday boxes, tins and containers to pack confections in. It would be wonderful to find “treasure chests” to put these gifts in for each family and I will be in the lookout for something but I may have to improvise.

To conserve energy, I’m going to purchase Tollhouse cookie dough from the refrigerator section of the grocery store. I’ll make Magic Cookie bars and peanut butter fudge which will fit into the tins I’ve purchased.

My recipe for Peanut Butter Fudge:

  • 2 cups of sugar
  • 1 stick of butter
  • A few tablespoons of cocoa (or you can try 1/4 cup)
  • 1/4 cup of milk

Put together in a saucepan, stirring while melting the mixture. Boil approximately two minutes. The mixture will slightly thicken and the bubbles will change when it’s ready to add:

  • 2 heaping spoonfuls of peanut butter
  • 1 teaspoon of vanilla.

Mix well until smooth and creamy and pour immediately into a buttered platter.

The amounts are approximate. I don’t measure anything except the sugar and milk – the rest are eyeballed. It’s a favorite family recipe and almost always turns out well! 🙂

Enjoy!

Having CFS and Being in Denial

Posted: December 5, 2012 in Uncategorized

There has been no other explanation for my symptoms and yet I wasn’t on a formal program for wellness. I’ve used pacing to manage my activity level to some extent but I’ve frequently experienced the push/crash cycle. Frustration mounts with each cycle and it’s been difficult.

My symptoms aren’t as severe as they were in 2006 or 2007 but it’s evident I’m as well as I’m going to be. It’s time I realized that I’ll never work as a nurse again nor at any other job or profession. I’ve lost some cognitive ability along with the physical symptoms. It’s still difficult to sit upright for any period of time. Time to face the facts.

I’m going to try to post more often and I think I can manage to write more than every five years! I have had other blogs but only those with this disease can understand the frustrations we face everyday. Therefore, this blog will be a compilation of others I’ve attempted.

Hopefully others with Chronic Fatigue Syndrome will understand. Welcome back!

I’ve been giving some thought to being self-sufficient. I’ve always been independent, able to do what I wanted and needed to and this life-style is limiting in everyway possible.

First of all is the issue of an income. (I can grieve my prior income level at the same time I’m accepting my current status, can’t I?) In my quest to be independent in my new situation I’ve considered hobbies and other things I consider myself fairly good at such as:

Sewing – I started when I was a young girl with my Mom at my side. I designed clothes while I was in high school, clothed my kids until they went to school and finally about 8 years ago, designed my daughter-in-law’s wedding gown. It would have worked out well if she hadn’t out grown it by the time I completed it! 🙂

Writing – I’ve kept a journal through the years which has now been replaced by various blogs, this one included. I’ve considered writing for a living now. I hear in the right market there is good money to be made.

Ebay – I could open my own store, list items no longer needed or wanted. My opinion of necessities have changed in the last few months by the way. I could expand on the idea to include finding a niche.

Editing – I’m constantly rewording content I find on the internet. It appears to be a sorely needed occupation and will surely grow over the next few years. If you happen to get to Ebay over the next few days, give my listings a peek at Ebay Listings.

Photography – I love it but doubt I could make a living at it. I’m just not that good and it would take too long to get to that place.

Website development – Another hobby I love. Perhaps I’ll develop it a little more! I have a research project underway on SEO with about 60 pages of notes that have to be developed. I thought I would give it away as an info product when I’m finished.

Whatever I decide, it must be something I can do from home at my pace. I think I’ve decided on writing, editing with a little of Ebay thrown in for good measure. If you happen to get to Ebay over the next few days, give my listings a peek!

My Plan of Action or Priorities

Posted: January 29, 2007 in Uncategorized
  1. Find a physician who is familiar with CFS/ME who also accepts Medicaid. I’m prepared to call throughout Michigan if I need to beginning with my area. How humiliating that I’m reduced to accepting welfare and what’s worse – asking a medical professional to accept those reduced rates. Not that I’m not grateful…
  2. File for SSDI. Another humble experience. My fear is that I’ll be homeless again before I get well or actually get disability. I’m still hoping but after this length of time, I’m also realistic.

Both of these items requires far more than is documented here. First, I have to find a doctor, find the money to get there and continue to treatment. The doctor also needs to be sympathetic to my plight for disability issues which, I understand, will take more of his/her precious time.

Filing for SSDI is another issue that I’m not looking forward to. Part of the reason I may not be able to post here much in the next week is because I have to schedule my activity. First things first.

I’ve been looking online for information about CFS and have found controversy surrounding the CDC criteria, the NICE study, the psychiatric group mentioned in the article below – I’m confused.

This post is a preliminary search into information. I’m not going to review it at this point but I want to find information. I’ll save my opinion until after thorough review of everything I find. Surely we have to be careful of medical information found on the internet, I realize that. I also want to be well informed to the best of my ability. The internet has a place in that endeavor.

The One Click Group is a healthcare advocacy group based in the UK. Their website states they are taking a break but I found a report dated January 2007 in their navagation. The reports I find interesting:

The One Click Group’s encouragement to adopt the Canadian Criteria. After comparing the CDC criteria and the Canadian Criteria, I would agree although I haven’t read the report. More on this later.

The Once Click Group report on the Gibson Inquiry

Their response to the NICE guidelines. The NICE guidelines have been postponed in part because of this report.

Why am I concerned about information published in the UK since I’m in the USA?  

I’m concerned about all research into this disease. CFS/ME is an international illness and we need to be aware of what is happening in other countries as well regarding this disease. It seems our CDC isn’t the only organization involved in controversy.

I also want to find links to information published at the recent Florida meeting. More on this later.

The minutes of their meeting was interesting to read:

This is the result of those who would abuse the system to get money for projects that have nothing to do with CFS. We are all aware of a psychiatric group in England that has broadened the definition of CFS to obtain a large amount of money to promote CDT and exercise therapy. In the last few months, it is increasingly clear that this psychiatric approach has successfully crossed the Atlantic Ocean and become the pervasive approach of the mainstream medical profession.

For example, you can go to the Medscape website and get CME credit for a course on pediatric CFS, which assumes that the children are perpetuating their illness with de-conditioning and a fear of exercise. The Dr. Donahue advice column also purports that exercise is the cure for CFS. Additionally, the University of Michigan is staring a clinic for fatigue studies, including CFS. They have also stated that exercise is vital. This exercise approach has overtaken mainstream medicine. This is why patients harp on the name and criteria.

The concern is that in these studies, Chronic Fatigue Syndrome is not differentiated from other fatigue states. The fatigue in CFS or ME is dintinctive – it does not improve with exercise and in fact, a patient with CFS worsens after exercise.

Exercise may be vital in some fatigue states but for people with CFS, it worsens our symptoms to the point of reducing our functional capacity. Hopefully the University of Michigan will be able to separate the different fatigue states and document that is exactly what happens. Somehow I doubt that.

Caution! Brain Fog Ahead!

Posted: January 28, 2007 in Brain Fog

One of the most frustrating aspects of this disease is brain fog. Even typing becomes difficult as I make more errors.

I’ve kept a journal through the years and have dreamed of being a writer. Fat chance now. I can’t take a thought and develop it let alone progress it to a logical conclusion.

The practical side of me thinks there must be some exercise or activity I can do for this.

Edited to add: I just Googled “brain fog” and came up with a few suggestions:

1. The first thing I found was that brain fog could mean that you’re out of your envelope. Too much activity, either mental or physical could cause lack of concentration, problems finding words and other symptoms. Resting for as little as 15 minutes could help.

2. When did I last eat? I fixed myself some oatmeal because I remembered it has been quite a few hours since I last ate.

3. Multi-tasking! What? I can’t have a dozen pages open in the browser window any longer? What a bummer!

For more information, see the article: Treating the Fog