Patient with CFS condition are in extreme need of a suitable room. CFS patient especially the one with heavy symptoms will stay in the room most of the time to reduce the severity of the symptoms.
Requirements of Room for CFS patient
- very clean
- quiet and peaceful
- full privacy
- easy access to healthy food & plain drink
- easy access to bathroom
- wireless for studying therapy
- enough space for praying
- having nature as therapy
- easy access to laundry
- no other sick person around (feeling pain unable to help others as much as i need to)
- other possible therapy
Missing any of these elements will make my illness worse and weakness will intensify which will lead to severe on/off paralysis .
Friday, December 28, 2018
Thursday, November 29, 2018
Tuesday, November 27, 2018
OKU CARD RECEIVED EVENTUALLY (2/11/2018)
Salam and Peace to All,
Dear brothers and sisters across the globe,
I would like to share my journey as a Chronic Fatigue Syndrome (CFS) patient, struggling to get the OKU card . I have been suffering from CFS for almost a decade. Overwhelming weakness which lead to paralysis anywhere, anytime, everyday, at every moment is not a joke.
I would like to share my journey as a Chronic Fatigue Syndrome (CFS) patient, struggling to get the OKU card . I have been suffering from CFS for almost a decade. Overwhelming weakness which lead to paralysis anywhere, anytime, everyday, at every moment is not a joke.
Difficulty breathing and communicating with people makes things so difficult to handle without support. To make it worse, 99% people doubting me having this illness and I receive verbal abuse constantly which makes my heart bleeds a lot and worsen my physical condition. However, I can't blame them because this is an invisible illness. Totally invisible to me, let alone others.
The journey to get OKU card is so challenging. Travelling back and forth to the hospital worsen the existing symptoms very much. The torture is real and so overwhelming that I often shed tears and almost give up. Seeking help from God, He inspires me not to give up and seek help from NGO and that’s where I found MIIA. Searching randomly on Facebook, MIIA's page just popped out and swiftly they responded to my message of seeking support to obtain OKU card.
For 4-5 months, MIIA members have loyally helped me, accompanied me, struggling with me throughout this journey. With a letter of support from a trustworthy Psychiatrist, an understanding Rheumatologist, and Rakesh Kumar, a dedicated Physiotherapist who is also the Founder and President of MIIA, eventually alhamdulillah, all praise be to God that our effort finally bear fruit when eventually I received a letter from JKM saying that my OKU application has been approved.
My deepest gratitude to my family angkat for being supportive and to MIIA, my trustworthy family, for believing in me having this invisible illness and supporting me wholeheartedly especially to the President of MIIA, Mr Rakesh Kumar, and his teammate Miss Hidayah, my two angels on Earth. They helped me dealing with the daunting hospital procedures, patiently pushing my wheelchair around, being so caring and humble, and firmly stood by my side against the doctors and public who doubt the severity of my condition.
Thank you for the support, MIIA. I can't express my gratitude enough. May God bless you all.
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