Tuesday, May 23, 2017

How I didn't let a new symptom take over my life.

It has been a few months now, I started to have one eye seeing double and blurry, it is such a great challenge everyday because I have to still continue living my life, trying to work etc not knowing what it is and trying to addapt to this new vision.
I won’t lie, it was a very hard time in my life if not THE hardest time but I feel better now, not that my vision got clear again but I got used to it, and after all do I have another choice ?
So,  I stood up for myself and went out of my comfort zone, once again I didn’t let my condition rule my life and cut it short. I feel empowered right now, but I admit I do feel very sad from time to time and I don’t undestand how it works and if i twill get worse with time, honestly I think yes because I feel the difference with time. I know I have to prepare myself for every possible situation at any time.

What I would like to say is, it is indeed very hard... Not only on the body, but also on the mind, it gets on my nerves sometimes and then I am frustrated and anxious.. but I work on myself and try to be stronger each and everytime, it is a constant battle and I don’t feel like myself most of the time, but I do continue to fight and try to keep the most of what I can keep..most importantly my free soul..

Friday, April 28, 2017

Positivity in Paris

I've been off work for almost a year. I have fibromyalgia and hypermobility and I managed to sprain my coccyx and the pain would put me in bed for days at a time. 

Back in November, after over 2 months off, I made the decision to travel with my other half to visit friends in Edinburgh. I was terrified, I won't lie to you. My fears were that I wouldn't be able to sit for long enough to take the train, that I'd struggle to move my baggage without causing days of inactivity. That a flare up would stop not just my fun but the fun of the people I was visiting and my wonderful boyfriend who's lifelong friend we were visiting. I feared that the spare bed we were offered wouldn't be a nice firm mattress and I would wake up with all over joint pain. 

Even the day before I was weighing up my options. The conclusion that eventually came to was that for many years I have worked all week and rested all weekend to manage my pain. I would never have booked a trip away over a weekend, or dared to take a risk in case it caused me time off work so this was my chance to see some of the world! 

The train was painful so I got up and walked around. My bag was heavy, and though my boyfriend helped, even getting from the train to the taxi with my hand luggage seemed a strain.

We walked through Edinburgh enjoying the tour and we walked and we walked. My Fitbit buzzed before too long marking 10,000 steps. It hurt but if I'm honest, it hurts anyway so at least this was worthwhile! 

When we returned to the flat...a futon. Firm mattress' are one thing but futons scared me. Ah well! No choice! 

I woke up feeling ok and we walked and walked and walked some more...

My fears could have prevented all this and encouraged me to stay in the warmth of my cosy home where there is no need to walk far or carry much but after the weekend my back and my joints felt terrific! If I'd been at the gym. I'd have stopped when it hurt. But miles from home and having to continue, it was only walking but it felt like a marathon and it was the best thing I could have done.

Fast forward 6 months and I have done another adventure. I've resigned my job and dipped into my savings and travelled to Paris with my partner and a team of athletes. He's part of a team and there was a competition.

Again, I was scared, I can't keep up, I'll be in pain, it will be too hard. Once again though, I had very little to lose, except the experience of being in Paris! I knew whatever happened there would always be taxis and a hotel room. 

The first few days I took it easy and eased myself into it, when the group travelled to Paris one afternoon I knew my legs wouldn't step up to the challenge so half way to the station I turned back. Another sunny day I went with them and was tired and in pain the whole time but I saw so many things and the pain couldn't ruin it, despite it trying so hard. 

As the week went on and I walked more and more the pain increased. I was hopping from one bench to the next and trying to keep up with a bunch of athletes. So many times I thought "this was an error, I shouldn't have come." But I battled on and my reward... I managed to do a days extra walking than one of the athletes and felt very pleased with myself. I was also proposed to in the most romantic city in the world. 

I have returned home with a fresh spring in my step. Sure, the pain is debilitating and it's hard work, at home it's hard to sort the washing some days, why suffer for such a small reward? But I am more motivated than ever to get back to work and save for my next trip. What is the pain for if it's not to feel proud and strong and brave and to accomplish things you fear you're not capable of?

Positivity is what did it, and not listening to that voice in my head that says "you can't, you shouldn't, it's too hard". You can and you should and if it's hard you just get to win a tough battle!

Tuesday, April 18, 2017

How to speak to your doctor in 5 steps.


                                        

Going to the doctor for someone with chronic illness is like going to the grocery store for a normal person, it is a monthly trip or sometimes even a weekly trip, to have a check-up and renew your prescription, the first times you feel relieved to see the doctor, to know more about what is happening in your own body and get to know your illness, but when it becomes a habit, you feel stressed when that time of the month arrives and it is even stressful when your doctor doesn't get you and it is usually the case when you have an invisible or a not well known illness.
With time and experience, we know our our bodies by heart and we know exactly when something goes wrong even when sometimes doctors cannot find what it is in early stages. What we need is support, for our doctors to believe us and when we have new symptoms to explain to us where it comes from and how to ease our pain, that we are heard and that we matter.
Doctors are used to see a lot of patients and all patients are different, so they don't make a difference, they act with us all the same way, they don't get afraid or get involved, they don't get attached and sometimes it even feels like we are just a case, "a patient", nothing more and it is very important for me as "a patient" to feel like a person, like my pain means something and that everything that needs to be done for helping me will be done. Here is how to speak to your doctor in 5 steps.

Step 1:
Nobody knows what you feel better than you, so before your appointment, try to write down or just remember exactly where your pain is, what you feel and where you feel it and tell your doctor.
Step 2:
Sometimes, when your are used to pain your pain scale isn't the same as your doctor's so try to explain exactly how much pain you feel
Step 3:
Listen to your doctor, but also give them your opinion, you and only you know what works for you.
Step 4:
Ask as much questions as you want, it is your right to know what is happeing inside your own body.
Step 5:
Finally, if you are not satisfied or don't feel comfortable with your doctor, first tell them maybe they will make more efforts or just ask for a change, the aim of going to the doctor is to feel better nor worse..physically and emotionally.

Tuesday, April 11, 2017

My chronic illness story.

My name is Meriem, I am 26 and I have been diagnosed for 6 years now, I have Sjogren's syndrome and it is a systemic autoimmune disease that affects the entire body, along with symptoms of extensive dryness, joint pain and other serious complications including profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas. 
As for me, I first started having the first symptoms about 8 years ago, I was a student at university then and thought all that fatigue was due to my long days of studies, it was only when I started to have red, hot and swollen knees every evening, I decided to go to the doctor. They had all the blood tests done, X-rays etc and since I was young they directly thought it was Acute Articular Rheumatism, they gave me some injections to do. I went to do the first one that was supposed to cover 15 days and make me feel better, everything went well, but a few days later, I woke up in the middle of the night sweating and not feeling very good, I went to call my mom and then everything went black, I had a syncope and an anaphylactic shock, when I finally recovered conciousness all my body rashed and it was like this for a whole month.
After this episode, I became allergic to almost all anti-inflammatories and antibiotics, my symptoms continued to worsen and the pain and redness migrated to all my joints, added to that I started to have stomachache and fatigue all the time, my blood tests tested positive for an immune disease but without specificities. For the first time, doctors took me seriously, because before that since they didn't know what it was, they didn't take me seriously especially since the illness was invisible, when you see me, you cannot guess or even believe I have one. My family were sad because before we had proof there was something, they were content doctors didn't know what I had, it was like in their head I wasn't sick, but for me it was a relief, I even wanted to get it framed, at last we had a track of what it was, that it was actually something.
It was the beginning of a long journey, hospitalizations, biopsies, blood tests, X-rays,MRIs, they first thought it was Lupus, by the way they still think it is but not so sure, because I have glomerulonephritis that is supposed to be caused by Lupus,but all other symptoms and severe dryness is for sure caused by Sjogren's. Other than the medical aspect, medications, etc, the hardest part is all the changes that we have to do, we have to create a new routine, new goals and be a stronger person, a more positive one. It sure is easier said than done and it is a daily struggle, a fight againt your own body and mind. 
Today, I can say I accept my illness and I accept myself with all my flaws, I am far from perfect and I still have issues that I cannot fix a hundred per cent, but I try my best, I live the moment and enjoy each day that is given to me. I would even say I am lucky to have lived what I lived, to have experienced pain and been in a dark place, because it made me realize what is the most important in life; family, love and inner peace..all the rest is only details..

Monday, April 10, 2017

Chronic Illness Is Like A Warehouse





There’s an abandoned warehouse behind the library. I’ve been wanting to take photos there for many years, a bucket list kind of thing. I did it, finally crossed it off my list. Half jumped a fence and everything. Didn’t realize the other side was wide open til I was leaving, oops.
 It looks exactly as an abandoned warehouse should – parking lot overgrown with weeds, rusted fences, doors, and all.  This building I think was more recently used as some sort of nightclub, but hey. Maybe it adds to the charm.
That’s the thing. I’m not joking. I really do think the building is loaded with charm. Not the kind of obvious charm that hits you in the face, but instead a subtle beauty.
It’s like chronic illnesses. On the surface they are dark. Painful and ugly. Certainly nothing beautiful. But oh, I beg to differ. Through the darkness a light can shine, if you let it.
Those horrible days of chronic illness, when the pain is too much to handle, think of them like the photos of the warehouse- rustically beautiful. They’re hard, but you can do it. You can get through them.
Think of the beautiful things chronic illness has taught you. It has taught you to understand yourself in new ways, to care more for others, to learn balance, gratitude and perspective. It’s quietly beautiful, chronic illness. Just like my warehouse.

Tuesday, April 4, 2017

Communicating Your Needs During A Flare



Fighting chronic illness takes a complete toll on us. Our loved ones are always asking what they can do to help, but actually allowing people to help can leave us feeling guilty. I battled this feeling for a long time. I still have to remind myself it's OK to let someone help me when my body needs rest. It's hard to always answer the question "how can I help you". To make answering this question easier for me I made a list of the most common things I need help with when I am in pain. 
  1. Taking care of my daughter. My parents are amazing at helping me take care of my sweet girl when I am flaring. My daughter gets really anxious when I flare and wants to take care of me. I have to remind her that it's not her job to care for me. This has been the most challenging part of chronic illness. 

  2. Medication check! Making sure I have a full bottle of steroids and pain meds. Nothing helps to fight a flare better than these meds. 
  3. Easy meals are an amazing necessity when flaring. Having food that does not require a lot of prep makes life a million times easier when I am able to get up and move around. 

  4. Simple household task such as loading the dishwasher or doing a quick load of laundry. These truly are small things but mean the world to me. Nothing in this world stresses me out more than to be in the middle of a flare in a messy house. 

  5. Assistance with personal care is sometimes necessary for really bad days. A hot bath really helps soothes your joints but getting in and out can be hard. A trusted friend or spouse can definitely make this easier by being there to help you get in and out. They can even help wash your hair or get dressed if your body is really struggling. 

  6. No phone calls, texts, or visitors. There is nothing more aggravating to me then to have my phone ringing while I am trying to rest during a flare or feeling obligated to answer text messages. Over the years, I have communicated to my friends and family that when I am flaring the best thing for me is uninterrupted sleep. When I flare I try my best to send out a text to my friends and family to let them know I am turning my phone off. 

Having a list handy allows us to communicate to others what we need without having to constantly tell them. We get the rest our bodies so desperately need and they get to help us when we need it the most. What would you add to your list? How do you communicate your needs? Gentle hugs pain warriors! 

Thursday, March 30, 2017

Sharing stories helps me stay strong

Long before chronic illness was a part of my life, I was big on reading. When I was just a toddler, my mother made me my first book, a collection of large, brightly-colored magazine pictures glued onto white paper. We would sit together, looking and talking about what was going on in the images.

Those early days set the pattern for my life. Way before the Internet and before I even understood the concept of a reading group, I loved sharing the things I read with friends. As beloved as the ever-cool (and ever in middle school) girls of the Baby-Sitters Club were, it was nothing compared to the delight of discussing every nuance with another fifth-grader. There was something so incredible about sharing a private world with another person, someone who could exclaim, “I know, me too!” Instantly the conversation, no matter how brief, would elevate my mood.

At age 22, I was diagnosed with lupus, fibromyalgia and polymyositis, a rare disease that causes muscle atrophy. Suddenly the most simple tasks, which I had once done regularly without much thought, left me exhausted – if I could do them at all, that is. It was as though my life had abruptly been swapped with a stranger's, and no matter how much my family and friends claimed to empathize, I knew that none of them could truly understand. How could I blame them? It was difficult to understand it myself.

So my reading time became even more precious to me. With each book I read, it was easy to lose myself in the story. I could forget my own problems and limitations as I looked at the world through the protagonist's eyes.

This month, the University of Liverpool, The Reader and the Royal Liverpool University Hospitals Trust released their findings on shared reading (SR) being helpful for those who suffer from chronic pain. Individuals participated in small groups of no more than a dozen people, meeting weekly to discuss a variety of literature. Participants were invited to share any thoughts or memories that the selections triggered, often leading them to discuss various elements of their lives with illness or disability. Researchers found that the participants were able to alleviate their emotional pain by taking some control in what is ordinarily regarded as an uncontrollable situation. That, in turn, tied in with helping lessen their physical pain.

I could definitely relate to their findings. Over the years, I've shared my thoughts about the books I've read in a myriad of ways, from informal conversations with family or friends to online forums or blogs. This past year, I joined the local library's book group for the first time. It's amazing how you can take any book in existence, present it to a number of people, and get back the same number of different viewpoints and interpretations. Each person comes from a unique background, with different life experiences, and through them, you might start looking at things a little differently as well.


In the fourteen years since I first began my chronic illness nightmare, I've had my ups and downs. Symptoms have appeared – and mysteriously disappeared, only to be replaced with new ones. I don't know what the future holds for me in this respect. But I do know one thing for certain. Even if I can't be physically active, books will keep my mind active; and this is key in helping me navigate through the pain.
Related Posts Plugin for WordPress, Blogger...