Driving research of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS),
Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia and Long Covid

The Work of OMF Gives Me Hope

typewriterI am able now to plant out flowers for the market garden, by using newspaper to cover the ground, grass clippings over those and weed matting. It saves a lot of very hard work and I do it slowly. I get others to shift in the wood mulch between the rows.

Now there are rows of bright blue cornflowers, dahlias, dianthus, lavender, pansies plus a host of others all waiting to be picked. I wish I could add a photo here. They look beautiful.

I can do little bits at a time and have learned from this first year that I don’t have to transplant every seed that grows! I have plants for china – but then I have always tended to do everything larger rather than smaller. So now 1/3 acre is in plants and foliage and I’m figuring out how to harvest and ready for market. I don’t use sprays etc, and reacted with a day in bed to a florist product that keeps plants fed and water clean. So that is out. Another product I made for a proposed soap making venture with my products, just by skin contact put me in bed for a week. So now it will be gloves for everything and definitely no chemicals.

What I lack in energy I have to figure out new ways of doing or getting help to do. I may even use woofers from time to time and see how that goes.

When in bed years ago I won a computer, printer, scanner, software package for a card design I submitted into a competition. So I set it up around the bed, taught myself to use it and now hand-make wedding and event invitations, etc. But it is day-to-day. I often wonder what my clients would think if they could see me, sometimes having to lie down in between to cope with the nausea, weakness, headaches and light sensitivity etc. and still in my pjs, not showered and teeth unbrushed. But it proves to me I am not lazy and I never was depressed.

Tomorrow my husband leaves on holiday, without me as the chemical reactions has made me feel pretty fragile. That hurts a bit but that is just the way it is. The tickets are paid for and accommodation booked so his sister will go with him. At least it isn’t wasted. I will find something here that is enjoyable. Perhaps my daughter and I will watch Netflix.

I have 7 children and the youngest also has ME / CFS. She wants to be a Dr but is pretty much bedbound. Last week she said “If I can get to med school, I would love to go to sick patients with ME / CFS as they are too ill to drag themselves out to Drs. I would love to be able to organize in home IVs etc.” She has been at home since she was 13 and is now 27. She and her twin sister were very good students and often came top in their studies.

Being pretty homebound (I can go out occasionally) means I am here to help her and make sure she has what she needs. I trained as a registered nurse years ago and that helps me now, to know how to help her a bit more. While my husband is away her twin sister will stay with us and give us both a hand. That will be the upside for me as she lives in another city and we will all spend time together.

Last week I was too ill to get an invitation order out. Two sons, a daughter-in-law and a granddaughter came over and pasted, printed, punched out shapes, stuck and collated. Yesterday my husband delivered 133 perfect invites to the corporate client who loved them. It was a success! But what meant the most was seeing my family all gathered around helping me to do the order. It meant so much.

I have had a lot of negative comments from extended family that really hurt, but it is because they do not understand, they are uneducated. We have tried to explain but the remarks from a Dr at the beginning who said she did not tell her patients they had ME / CFS as they took to their beds – has unfortunately made the first and deepest impression.

So here I am, lots of years down the track with ME / CFS – have stopped counting the years now – and I have made gains and learned to live with the unpredictability of it – mostly. Although it is so hard to take another relapse when feeling progress has been made. But I have to stay positive for my family and daughter’s sake.

The work of OMF gives me hope. I’m so grateful for all the people working so hard to try and find us a cure or at least some help. We pray each day that they will. We understand the huge load they are carrying in trying to do that and can only say thank you so much for giving so much of yourself to trying. We wait for the news that success has finally come. Not just for my daughter and I but all of you out there struggling as we are and especially those who are alone with no-one to help. Here’s the link to my story. Thank you for letting me share and sending my love and prayers out there to all others in the same situation.

Wendy
New Zealand

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

What are the advantages of giving from your Donor Advised Fund (DAF)?

  • Your gifts to your donor advised fund entitle you to an immediate income tax deduction at the time of contribution.
  • You avoid capital gains tax on appreciated assets you place in your donor advised fund.
  • Your fund’s investment gains accumulate tax free.
  • Funds are distributed to Open Medicine Foundation in your name and immediately put to use to support our worldwide research efforts.

How do I make a donation through my DAF?

Just click on the DAF widget below. It is simple and convenient to find your fund among the over 900 funds in our system.

Still can’t find your fund? 

  • Request a grant distribution through your Donor Advised Fund sponsor
  • Be sure to use OMF’s EIN #26-4712664
  • You can also designate OMF as a beneficiary for your Donor Advised Fund
  • Questions? Give us a call at 650-242-8669