Posted by: eczemancipated | October 14, 2012

Caregiving

These last 5 months I have received an amazing amount of support from my friends and family both physically, emotionally and spiritually. So I would like to talk about the caregivers and being the one receiving care.

I’ve never been one who has needed much assistance and was raised to be quite independent and self-sufficient. Dealing with such a terrible illness as Red Skin Syndrome really leaves you no choice but to be so incapacitated that you must accept assistance when provided. I really urge the family and friends of an RSS sufferer to come together and try to be available to help on every level, no matter how small, while they are getting through the worst of the withdrawals.

Becoming my primary caregiver, my husband has suffered in different ways as much as I have. He has continued to work full-time while handling all of the housework, making meals and offering an abundance of emotional support.  We usually do our volunteer work together, but he has been on his own with me being out of commission.  Like many of my fellow RSS sufferers, we have been spending a ridiculous amount of money on healthcare for the last decade and so I appreciate that my husband has always supported my spending on healthcare.

After the first month of TSW, so that he didn’t become overwhelmed, my family came together to provide us assistance. My mother flew out and stayed with us for two months, then my sister for a couple weeks and then my aunt and uncle have been opening their home to me a week every month.  Also the local congregation we belong to put me on a list to receive weekly meals, different members have run errands for me, taken me to Drs. appointments and stopped by from time to time to keep me company when I was home alone. My landlord has even been really helpful bringing me my mail, giving us little gifts and cards and checking in. And currently I’ve flown to NJ for a month to receive a little more help from my mom.

I think because I was also going through the Lyme antibiotic treatments at the same time that I stopped the steroids, it may have been a little more intense for me than if I had just stopped the steroids at a separate time. I was told to go on bed rest to recuperate from the Lyme and to be prepared for the Jarisch-Herxheimer reaction, before I even learned about RSS. So we had already been in conversation with my family about helping out while I was on the 4 month Lyme treatment – IF – I did get violently ill. Then a month later we figured out I had to come off the steroids and that’s when we realized I was going to for sure need the help.

We have received so much comfort and support from our friends and family’s provisions. There is no way I could have muddled through this without my husband’s tender compassion and endurance. It is helpful knowing their assistance will continue until I have fully recovered. Some days I have wanted to swim in a vat of steroids to make the pain go away. But having all of the care of my friends and family made me want to keep going to make them proud and let them know their efforts were not in vain.

There are many of you already pouring yourself into the role of caregiver for your friends and family dealing with the withdrawals. I applaud you. Also, I especially admire the parents of the little ones who suffer intensely; it must be unbearable to watch.

However, I have read many other blogs from RSS sufferers and realize that some are going through this alone. Some have given up within just a few weeks of withdrawals. Even Dr. Rapaport mentioned in his Fox News interview that some of his patients have been extremely suicidal. My heart goes out to these ones, as I know they would prevail if they had enough help.

So if you are reading this and you are not suffering with RSS but know someone who is –  providing something as simple as a meal or cleaning a room in their house means so much to those suffering.


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