I’m Not Alone!!

Over the weekend, I spoke to the first native African I know diagnosed with Stiff Person Syndrome. Being an African lady with this illness, I had never met another. After all its a one in a million disease. I stumbled upon this fellow warrior and we got talking.  It finally hit me; I’m not alone in this. Others are suffering and fighting back too.

I can do it, I can keep fighting. I’m not alone anymore.  That call gave me hope and strength to go on. To look at the situation with a different set of eyes.
Thank you Lord for giving me the opportunity to meet others like me. Please give me the strength to keep fighting.

To all those chronically ill. You are not alone. Diagnosed or undiagnosed, there are others like us. I’m here and fighting really hard to keep being here.

A Letter to Patients with Chronic Disease – Dr. Rob Lamberts

Hold On or Give Up!

I know this statement sounds harsh, but I guess some people would understand and a few might even agree with me.

Today it got clearer, I finally understood that I’m going to keep fighting. I’ve been practically weak and out of breath almost all day. I was expecting a loved one to bring me dinner because cooking is really difficult right now. My loved one came home really late and without dinner. The hurt I felt…but then, I have to take my meds and I need energy so what do I do. I held the walls, limping to the kitchen, I made some fries n reheated some fried fish. It was at that moment it dawned on me. ” I’ve got no choice but to keep fighting to be strong, to hold on, to hope, to keep the faith alive.” I’ll keep getting disappointments from loved ones, my body will act out in ways I may not be able to control and it might get so lonely out there…

When giving up isn’t an option all I can do is Hold On!

Hanging in There!

A dear friend advised me sometime back to come online and at least write or read blogs. I guess after I left the hospital something just went silent within me.

Doctors were questioning my diagnosis, mental stability etc and it felt like too much. I needed a break from my head, my body and practically everything. I pulled away from friends and loved ones. I really felt like I had nothing to look out for and to top it off the hospital misplaced my medical file.

I got better physically, I was taught how to handle the spasms better. But lately it seems like I’m having a setback. The symptoms seem to be returning. though some never left. Its getting harder to get out of bed. The pains that used to make me cry seem to be coming back. I had to go back to using my walking stick sometimes etc.

The year is ending and as it has been for sometime now, i get caught in a dilemma towards the end of the year: between gratitude and ingratitude, doubt and hope. I wish i could go out whenever i feel like, spend time with friends etc but I can’t. I can’t go to my garden and I cant cook or bake in the kitchen but I am grateful to be alive because i believe LIFE is the greatest gift to humanity.

So, if anyone asks me or wants to know how im doing? I’ll just say- “I’M HANGING IN THERE”.

30th Birthday in the Hospital

I was 30 on the 30th of July. Which is really great. I’m grateful to be alive. The downside was that, I spent it hospitalized.

A birthday, I was looking forward to but I must confess with mixed feelings. Little did I know it would be spent in a hospital bed. I got cakes and cards, I did my best to focus on my blessings that day. I am alive. I can see hear and talk. I could taste a bit of the cake and some of my loved ones were around.

It obviously would be a birthday, I would never forget and im grateful to all those who made me smile amidst the challenges I was facing.

Thank you Lord for always being with me even and especially in situations I don’t understand.

Holding It Together!

I’ve been at my lowest point healthwise for a while now.
Till I get my strength back it might be difficult to coordinate my thoughts together to write.
All I’m doing right now and for the past few days is just HOLDING IT TOGETHER. I’ll appreciate as much prayers and positivity I can get.

I’ll Keep Standing Up

I had a really bad fall yesterday,  one minute, I was talking and the next I was falling and there was nothing that could stop it at the time. I hit my head on the side drawer, my other body parts on other things, then the floor. When I came to, I had this very painful spasm. I tried to get up to go lie on the bed and guess what? I fell again. Yesterday started ok. I didn’t expect it to go like that.i became extremely weak and sore. I had to crawl to use the bathroom.

For the life of me, I couldn’t think of any pain med that would reduce the pain. I am already on different pain meds. Every inch of my body hurt. I Managed to take a bath, someone helped apply some essential oils, used an ice pack on certain areas of my body and I  got ready for bed.

This isn’t my first fall. Would it be the last, I have no idea but one thing I’m certain of is, I’ll stand up again. This illness won’t win. I won’t stay sad and depressed. If you have read some of my other posts you know sometimes, I get really sad. The falls are part of all the autoimmune conditions. They hurt, can happen anywhere. But I’LL KEEP STANDING UP. This illness. Doesn’t win. I’ll focus on the days I’ll get to go to the beach, pool, take walks, have picnics with family and friends, go to the movies to watch the latest action movie. I refuse to let my thoughts be consumed of how bad my body feels right now or how I’m going to manage to get to the bathroom. I choose to be happy.

Thank you Lord for keeping me and giving me the strength to stand up again and again.

Breath; It’s One Step at a Time!

I have a restless mind, I’m constantly,  thinking, calculating, planning and analyzing almost everything. When your memory due to ill health, puts breaks on your thought process, you are sometimes forced to pause.

There is so much to do and so much I want to achieve. I believe illness or not, I’ll get to do some of these things and I would achieve a lot in life.

I just have to recognize my inability to do it all in one day.

Right now, I need to allow myself BREATH, and take it a STEP AT A TIME!

Celebrating the Good Days

Yesterday was a really bad day for me almost all round. Ive decided that today is going to be good. Can’t have that many bad days in a row plus when the days are getting harder I focus on the good ones.

So good day here I come!
“This is the day the Lord has made I will rejoice and be glad in it.”

They Are There But They Aren’t: Is it Still Me?

One of the hardest part of being ill (chronically) is losing people. In no terms do I mean death. It doesn’t happen suddenly. It’s mostly gradual. You see it coming but you just seem unable to stop it. People you love, people dear to you, people you’ve kind of built your life around.

Friendships, you thought you could count upon. Promises being broken with no explanations given. Personally,  it’s difficult to understand.  I’m a very sensitive person, emotional but logical and pragmatic. I like to analyze stuff. I have asked myself several questions as to what I could have done wrong? It is sad, breaks the heart and hurts from within. Because finally, you start to feel the loneliness. It gradually sets in that, though, surrounded by people,  you might just be all alone.

From their own perspective, maybe they are also suffering, hurting and just can’t stand being around, because it reminds them of how helpless they are.

I guess my life is entering into a new phase. Quite scary, I must say because it sometimes seems like I’m starting all over. But my principles and fundamental beliefs in God and life haven’t changed. It’s still me but not me.

I just wish underneath the spasms, pain, falls, weakness etc, my loved ones would still see that it’s still me. I really can’t blame them sometimes for withdrawing. When they can’t laugh loudly around me, can’t touch my skin, can’t whistle around me, can’t eat for fear of triggering spasms from the sounds the cutlery makes. Maybe, they think it’s best to stay away from me. Maybe in their own way they are trying to protect me or take care of me.

I enter this new chapter or phase of my life accepting that things have changed and would continue to change. Friends might come and go. A guy might just fall in love with me despite all I’m going through or not but God would never leave nor forsake me. He is and will always be there. I choose to show love to everyone, hopefully, they might come around or not.

I’ve decided to be strong and accept that situations are not always pleasant. People may not always be nice, caring or supportive,  when I need them to be.
Everyone has a role to play in my life. I’m too weak and ill presently to try to control (even if I could) the roles each person plays.
I have decided to accept and appreciate them all and to learn to be patient with them. It is a difficult pill to swallow but this is the life I’m living presently and there is no point to sugarcoat it.

May God continually guide me to take the right decisions, each step of the way.