Health & ME/CFS, This Crazy Life

Guest Post: Rhiannon Tells It Like It Is – to the SSDI Appeals Council

Today I want to share something very special with you – a letter my daughter, Rhiannon, wrote to the Social Security Disability Appeals Council, about growing up with a sick mom, and the changes over the last couple of years. She has quite the voice, my daughter.

by Rhiannon

To whom it may concern:

I am Rhiannon ******, the daughter of Kelly Collins (edit: otherwise known as Ash). My mother has been chronically ill my entire life. This is not an illness that can be understood unless you are in the midst of it all, unless you’re the one suffering or watching your loved one suffering. I am both. What must be understood is that all of the things that combine to create my mother’s illness are not things that can be recovered from. This is not the flu, one does not feel awful then fully recover. This is a lifelong degenerative illness.

How has your health changed over the last two years? If you’re a healthy person, it likely has not changed much. How has my mother’s health changed? Tremendously. She is not better, despite trying new medications and treatments. Her health has continued to decline, as is typical of this illness.

I have been living full time with my mother for the last six years. I have seen her go through everything. I have seen her almost die. Despite being young, I bear the weight of the household. Keeping up with household duties is solely my job. I am my mother’s sole caregiver. She does not take care of me, I take care of her. My mother is there for me emotionally, she is a great mother and does her best. But since the age of eleven, I have been my own caregiver and hers.

Most parents cook dinner for themselves or their children every night. My mother has not cooked dinner in years. I cook dinner for her. If it wasn’t for my efforts she likely wouldn’t eat. Frequently before I go to bed I cook something, like baked chicken and homemade mashed potatoes. I do this so that she has something to eat when she wakes up. So she has a nutritional lunch to keep her going. I do this because I love her. What if you suddenly lost forty pounds? Would that be alarming? Yes, yes in fact it would be very scary. This is what has happened to my mother. She has had an extreme weight loss recently. She barely eats because she is so nauseated all the time and has no appetite, and I do my best to insure that she has things to eat, to prevent her from starving to death.

Try imagine being in my place. When you were eleven do you think you could have handled everything I have been doing? I didn’t think so. This is not a mental illness. This is a brutal physical condition. There is no miracle cure. There are only pills to treat the physical symptoms. If a loved one of yours was suffering this much, don’t you think you’d want to do everything you could?

Reflect on something for me briefly. Can you remember the worst headache you have ever had in your entire life? The intense pain, the strong instinct to curl up in a ball and rest, sound familiar? Now imagine that intense sharp pain combined with other factors. Perhaps your pet runs gleefully down the hall. It doesn’t seem like the sound of their claws on the floor would be much of a sound at all.

However, if you suffer from migraines, it might as well be an explosion. Sound sensitivity is very common in chronic migraine sufferers like my mom. That, combined with light sensitivity, makes daily life a struggle. Most people like to sit in the sun, watch it filter through the trees. My mother is one of those people, she loves nature. However, when the migraines hit, she can not even enjoy that simple pleasure. She has to hole up in her dark bedroom, away from any light and sound. These are not rare occurrences, they happen daily. Does this sound like a person that has much of a quality of life?

Most people leave their homes on a daily basis. How often do we leave home? Weekly, if I’m lucky. It’s not uncommon for us to be almost entirely out of food before my mother feels up to going to town for a rushed grocery trip and to pick up things from the pharmacy. This isn’t because she’s lazy or doesn’t care, it’s because she is so bedbound that driving twenty minutes into town is a huge endeavor. We can’t go if it’s raining, because the wipers and lights will trigger her migraine to become worse. We have to time our trips so that the sun is not so low that it will be in her face, because of her light sensitivity. Once we are there, she waits in the car while I do the grocery shopping. Right now I have only my learner’s permit, so she has to be the one to drive. As soon I have my driver’s license and at least that will be a little easier on us.

If you were in this position do you think you could have kept going? Do you think you’d be sad and frustrated at your situation? My mother is the most emotionally strong person I have ever known. She keeps going, no matter what. Is she frustrated at our situation? Yes, as am I. It would be unreal to expect that someone with a chronic illness this devastating wouldn’t be.

After all that my mother has been through, I think the very least she deserves is to have at least one weight lifted off her shoulders. Stress only makes any condition worse. I know this all too well first hand. If we didn’t have to worry about money so much, if I didn’t have to count pennies at the grocery store, if she didn’t have to worry that we might not be able to keep our house, it would be the greatest gift. We have enough on our plates, we don’t need the continued worry of having to fight tooth and nail for what she deserves.


Rhiannon ******

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