FIBROMYALGIA AWARENESS: PART TWO.

DAY 16: WHAT IMPORTANT ELEMENT OF MENTAL HEALTH & FIBROMYALGIA DO YOU WISH PEOPLE KNEW ABOUT?

I wish people understood that our physical, emotional, intellectual, social, spiritual, environmental and occupational health are all affected.
That when I say I suffer from depression and/or anxiety as a result, you will believe me.
That when I say I need mental health day, I need it more than most.
That mental and physical health are interlinked so if one is unwell, so is the other.
That this is not something I brought upon myself; It happens to me and could very easily happen to you or your loved one.
That I am not lazy but struggling with mental health.
That I am not crazy but struggling with mental health.
That you should not mock anyone struggling with mental health issues.
That people should attempt to understand anyone suffering from mental health issues before passing judgment.
That all we need is empathy, support and understanding. No one is asking for your pity, we don’t need it.

DAY 17: WHAT ARE THE OTHER COMMON ILLNESSES THAT COME WITH FIBRO?

Mostly that would be autoimmune diseases such as Systemic Lupus Erythematosus (SLE), Rheumatoid Arthritis, Ankylosing Spondylitis, Myasthenia Gravis, Multiple sclerosis (MS), Inflammatory bowel disease (IBD), Sjögren’s syndrome etc

For me, it overlaps with Systemic Lupus Erythematosus (SLE), Rheumatoid Arthritis, Mixed Connective Tissue Disease (MCTD), AntiPhospholipid Antibody Syndrome (APS), Demylinating Myelopathy, Polymyositis, Myalgic Encephalomyelitis & Chronic Inflammatory Demyelinating Polyneuropathy (CIDP)

DAY 18: DO YOU USE MOBILITY AIDS, IF YES, WHICH ONES?

Mobility aids are designed to help people with their independence and reduce pain.

Yes I do, on days that I need them, I use crutches. I’ve been using them when required, since 2009.

DAY 19: WHAT SUPPORT TO YOU REQUIRE?

Emotional: On days especially when mood swings & depression take hold of me, I really need my close family & friends to support me, and they do. They say every day, we, chronic illness patients, mourn a part of us we lost, and that’s true. On such days I need reassurance that despite this path I am currently on being so difficult, I can make it through & be the best that I can.
Physical: This is especially so when it comes to walking because I lose my balance a lot. Someone to catch me when my legs give way & help carrying things around.
Financial: What many people may not know is how expensive it is to treat & manage this condition. I only contribute about 20% to my medical wellbeing. The rest of it is catered for by my parents and I am very lucky to have their support. I cannot solely be able to take care of my medical expenses.
Psychological: Looking to soon engage a psychiatrist on this because mental health is just as important as physical health.
Other than these, I only ask for empathy, encouragement, support, patience & understanding.

DAY 20: WHAT BRINGS YOU JOY AMIDST THE PAIN & SYMPTOMS OF FIBROMYALGIA?

Laughing! 🤣 We all know this to be true! I think myself a humorous person & often find humor in every situation! That makes me very happy! Plus my close circle of people are also very funny so I laugh a whole lot!
Spending time with my family & friends leaves me physically drained & takes a while to recover but it brings me incredible joy. Our house is so noisy & filled with so much laughter, I’m surprised our neighbors have never complained.
When I can, exercising releases a lot of endorphins & makes me achy but happy.
Prayer: Prayer grounds me, reassures me & bring me peace in my situation.
Watching movies, football, making puzzles, I’m sure I’m forgetting some but these are all I can think of right now.

DAY 21: WHAT DO YOU APPRECIATE MOST ABOUT YOUR CAREGIVERS?

Their constant love & support. My primary caregivers are my parents & my secondary caregivers are my brothers. No matter what the day holds, they are ready to provide me with whatever support I need. My dad, who is my primary, primary caregiver, will never let me be/feel alone. He accompanies me to all doctors’ appointments (And trust me, over 15 years, that’s been a whole lot of appointments), tests, even when I’m meeting friends he often times drops me off. The fact that I know I’m not in this fight alone to me is EVERYTHING. My mom will always come to help me get up because in the morning, I am unable to get off bed on my own (Morning Stiffness/Paralysis). So she’ll come in, help me sit up, massage me a little to get the blood flowing, help me get dressed & everything. My 15 year old brother will check if I need anything on an almost hourly basis, especially with quarantine, all the things I tried shielding him from came to the fore & boy is this young man empathetic! It is such an amazing thing to witness. My 24 year old brother will never let me struggle with anything. We’re in a mall & I start having paralysis, he carries me immediately. We’re in a supermarket to buy soda, he’ll open it for me, I’ll drink it & he’ll carry it for me. I never have to worry about anything! Washing clothes, dishes, cooking, the list goes on & on….they care about me and for me, and that is all I can ask for. They are never ashamed of me or embarrassed of my situation! If anything, they’ve embraced it fully & love me unconditionally! My greatest blessing they are! ❤

DAY 22: GIVE A SHOUT OUT TO YOUR CAREGIVER(S). WHAT DO YOU APPRECIATE MOST ABOUT THEM?

My primary caregivers: My parents and my secondary caregivers: My brothers.

I thank you, today and always for your unconditional love, prayers, empathy, compassion, kindness, patience, forgiveness, humility, willingness to help, the fact that you are never embarrassed of me, that you support me loudly & unashamedly. When it comes to being my caregivers, you go above and freaking beyond! I see it & I appreciate it, more than you all will ever know! I love you!

I say this prayer for you:

That God may give you the serenity to help carry out your responsibilities as a caregiver, give you His peace & fill you with steadfast hope esp. when you’re overwhelmed, discernment in your quality of care, patience when I’m in pain or frustrated, divine understanding to anticipate my needs, wisdom when making decisions on my behalf, an extra measure of His strength on particularly difficult days, calmness to conquer anxiety & fears and absolute trust in His love.

Psalm 16:8-9: When you feel shaken, remember He is right beside you. You always have reason to rejoice and be glad because He is keeping you in safety, no matter what challenges you are facing as a caregiver.

My very first caregiver: Stephanie, you took on a whole lot! Aside from reading hard, you cared for me, day & night. You took the suggestion to the principal that I should become your roommate so it’d be easier on me, You made sure I ate, took my meds, had hot water to shower with, when you noticed my hair had started falling off, you’d wake up before me & remove them from my pillow to shield me from additional torment, If I turned in bed twice you knew I was in pain & would wake up and get me my painkillers, I passed out countless times & the biceps you possess today are all my doing!, You dealt with all my mental & emotional struggles (Depression, Mood swings, Weight gain, The ugliest stretch marks ever), you helped me study no matter how difficult it was for me. I know I’ve missed a lot on that list, but I know that I am here today largely because of you & the sacrifices you made. I will never forget it, dadar! I love you! ❤

DAY 23: HOW DOES FIBROMYALGIA AFFECT YOUR DAY-TO-DAY WORK LIFE?

My oh my! What do I start with? Mainly it’s the debilitating pain & fatigue. I cannot sit for long so some days I work from my bed to ease the back & muscle pain.
Fatigue literally knocks me out & I have to take naps in between so as to maintain some level of productivity.
Brain fog leads to memory lapses, difficulty concentrating & forgetfulness.
Insomnia causes fatigue & difficulty concentrating therefore interfering with my productivity
Sensory overload, that is, the overstimulation of one or more of the body’s five senses, which are touch, sight, hearing, smell, and taste, causes extreme irritability, discomfort & restlessness. This could be caused by anything really, the smell of coffee, blinking lights, too bright a computer screen, loud sounds from the TV or outside. And it can happen anytime without warning.

DAY 24: HOW HAS LIVING WITH FIBROMYALGIA AFFECTED YOUR SOCIAL LIFE?

There are a lot of things I cannot do. Anything I do, I pay for. Meeting up with friends, I’ll spend a day or two unable to do anything recovering from it. I never got to experience the teenage/early twenties: Going out all night, going on road trips, sleepovers, picnics, work events, all you can think of, and probably have never done it. I’ve not made a lot of friends in my life, I have a small, tight circle of amazing human beings I’m privileged to call friends, and I thank God every day for them.

Because of all these restrictions, I’ve also made a lot of connections online, especially with the Chronic Illness Community across the world. We have been able to love & support each other given our shared predicaments.

DAY 25: HOW HAS LIVING FIBROMYALGIA AFFECTED YOUR ROMANTIC LIFE?

Heeeeeh!! Where to start?! Between the pain, fatigue, unpredictability & 200+ symptoms of fibromyalgia, you need a highly empathetic human being, patient enough to learn about the condition then understand you, then you can begin a relationship. The fact that I cannot do majority of what people consider “normal activities” makes dating difficult. Having to cancel dates abruptly, the condition doesn’t allow for much spontaneity, sometimes you cannot touch me because my skin feels like it’s on fire etc. Then looking to the future & realizing that this is a forever thing. Medical bills will also be part of your life, it may be difficult to bear children, there are too many moving parts to this. Finding & keeping a romantic partner with not just fibromyalgia but most chronic conditions is proving difficult, esp. so if you have multiple conditions! But with all that said, it is possible. People have found wonderful partners despite their conditions so keep hope alive if that’s what you want for yourself.

DAY 26: HOW HAS LIVING WITH FIBROMYALGIA AFFECTED YOUR FAMILY LIFE?

It has been very difficult on my family. They have had to see me lose myself essentially, physically & mentally. Losing my ability to do everyday activities, having to physically carry me & care for me, watch my every move out of fear of what this condition has done to me. I am certified disabled because I cannot do for myself what is considered “basic” for survival. My brothers were affected from a very young age & went through things that break my heart just thinking about. But they are the best brothers anyone could ask for; the most loving & empathetic human beings. My parents had to contend with a lot esp. financially & psychologically. When we had no answers as to why I was in so much pain, it tore at them. My conditions have caused rifts amongst ourselves just because we were all struggling with it in our own different ways. However, we now are at a point where it’s “Us vs. The Disease”. They will fight for me & care for me till the end of time and for that I am extremely blessed & grateful.

HOW HAS LIVING WITH FIBROMYALGIA AFFECTED YOUR PROFESSIONAL CAREER/JOB?

Well, I received a lot of support from my former employer in terms of time off for my appointments, the ability to work from home during & post-covid. But looking back at it now, I was denied a lot of opportunities. There was this “Wendy is sick, she can’t do that” attitude. Nobody ever asked me, they just decided for me. I was passed over several times & when I asked, I’d be given a very weak excuse, so at the end of the day, there was no professional growth. And that’s what we’re all after. You don’t want to be in an organization for 5 years & never move up. It’s unfortunate that when you’re honest with people about a medical condition, it’s used against you; that’s not just my personal experience but that of 90% of chronically ill persons. That’s why I speak up, because my voice is needed; despite the effect it’s had on my career so far, if I don’t speak up, who will? I’m hoping that employers’ humanity will trump discrimination/nepotism! We’re not yet at that point, but hopefully, we’ll get there.

HAS FIBROMYALGIA AFFECTED YOU FINANCIALLY? IF SO, HOW?

Wow!! Where do I even begin?! It has drained my family’s finances over & over! Millions of shillings down the drain! And then just when you think you have a handle on things, bam!! Chronic illnesses are that, chronic, for life. I will have this illness till I die. So, between the doctors’ appointments, laboratory tests, imaging, prescription medication, therapies such as physiotherapy, hydrotherapy, massages, acupuncture etc. then to things like orthopedic mattresses & shoes, assistive devices, special diets etc. There is just so much I require on a daily basis & all these things are so bloody expensive! They say “Health is wealth”. If you’re still in good health, never take that for granted. Always be thankful that you live & breathe & experience no pain. What I wouldn’t do for a day with no pain!

DAY 27: WHAT WOULD YOU LIKE YOUR FRIENDS/FAMILY TO UNDERSTAND ABOUT FIBROMYALGIA?

It is unpredictable: Just because I could 20 minutes ago, doesn’t mean I can now.
I am not lazy: I am chronically ill. It’s not that we don’t want to do the things you are doing, we can’t. It will cause us pain & we’ll pay for it the next few days.
I am in pain ALL THE TIME: The kind of which I cannot describe. It never goes away even if you don’t think we’re in pain, it’s just at a manageable level.
I still want to be included in your life: Invite me even though I may not be able to make it.
It means the world when you make the effort to ask about & understand my condition & how my life is affected by it/them.
I hate cancelling plans, calling in sick & letting people down.
Just because I am sick doesn’t mean I’m not amazing at my job!
Just because I look well, doesn’t mean I feel well. Most chronic illnesses are invisible so always ask rather than assume.
I want you to know that I am doing my very best.
I have tried different exercises, different diets, different medications & different therapies.
It’s emotionally exhausting. I’m not ignoring you; I don’t always have the energy to pretend I feel fine when I don’t.
I want a distraction, I want a part of my life that’s not associated with pain or illness.
No matter how well you think you understand, until you have it, you really don’t have a clue.
I am not looking for sympathy or pity, I only ask for your support, understanding and empathy.

You can read more about what we’d like our family & friends to know here:

OPEN LETTER TO FAMILY & FRIENDS.

DAY 28: WHAT DO YOU MISS MOST THAT YOUR SYMPTOM PROHIBIT YOU FROM DOING?

Living life fully! I had not even began living when all these conditions came my way.

Just being a full participant in my life as opposed to watching things just pass me by because I have no strength to take part or are in too much pain.

That being said, I’ve been at this 15 years & I have learnt to live the best way I can & know how to. Sure I wish some things were different & I could do some things but I take it one day at a time. And in so doing, I’m able to enjoy & appreciate every step of the way.

DAY 29: GIVE A SHOUT OUT TO YOUR DOCTOR(S). WHAT DO YOU APPRECIATE MOST ABOUT HIM?

My current rheumatologist, Dr. Fred Otieno, who leads with compassion & empathy, is kind & understanding, who collaborates with me on my treatment plan & actually listens, sees & hears me and who advocates for me to make sure my needs are met. Who pushed me for over a year to start exercising & maaaaan! It was the best piece of advice. Our intent was to come down on some meds, but my pain is still excruciating & I’m maxed out on all my meds, so exercise has been a saviour of some sorts.

My former rheumatologist, Prof. Omondi Oyoo, who diagnosed me with Lupus, which then led to proper diagnosis & medication for the other conditions.

My former neurologist, Dr. James Jowi, who actually diagnosed me with Fibromyalgia, he’s such a soothing & calming doctor. No matter what he diagnosed me with, I always felt I could beat it because of him!

All the doctors & nurses at Aga khan Hospital Nairobi that has been a second home to me over the last 15 years. Thank you for your care, concern, love & diligence.

DAY 30: ARE YOU IN A SUPPORT GROUP? HOW HAS IT HELPED YOU & IMPACTED YOUR LIFE?

Yes, I am in 3, one for Lupus, another for Connective Tissue Diseases & one for Fibromyalgia. @fibrowarriorskenya. The role of a support group when dealing with chronic illness is understated. First & foremost, you realize that you are not alone & this gives you a feeling of hope & relief. These people know exactly what you’re feeling the moment you say it. They share their personal experiences, feelings, coping strategies, educate patients/family/the public about this condition, provide strength for one another & offer firsthand information about this condition & treatment. They provide emotional & moral support. They understand you, embrace you & never judge you. This support group has helped me maintain my sanity. It has taught me faith, strength, grace & resilience! I love you all dearly & pray that God continues giving us strength.

DAY 31: GIVE A SHOUT OUT TO THE FIBROMYALGIA WARRIORS THAT HAVE MADE AN IMPACT IN YOUR LIFE.

Lisa, Maureen, Isaac, Gladys, Suzzie, Ann, Karambu, Laura, Ivy, Sylvia, Jenny, Humphrey, Ephy, Ifunanya, Emma, Wendy, Keshy, Marvel, Lynda, Najda, Ruby, Sophie, Trish, Phelly, Faith, Miriam, Lynn, Anne, Elsie and the entire Fibromyalgia Warriors Kenya Group, I am exceedingly proud of you all for living your truth & making the best of these circumstances. Fibromyalgia has ravaged our bodies & minds, and yet we have come together to love & support one another. I wouldn’t have it any other way! Keep on keeping on, keep the faith, keep fighting, keep raising awareness & keep thriving. I’m rooting for you all, always! 💜

I hope that you have learnt a little more about fibromyalgia. Kindly share this with a friend or family member, and let’s keep the awareness train going! Let’s learn, educate, and empower. Thank you, and till the next post, warmth, love, and light. 💜