Great blogs I have read – Day 7 RAblog week

This week was awesome! I loved participating in RAblog week. It made me think and rethink my life with RA and I enjoyed writing about it. The topics were well chosen, I chose one of the Wildcards on day 6 because I did not feel like writing about my diagnosis. There were many great blogs to pick from and I’ll highlight the ones that spoke to me. My favourite topic was on day four; Five things I have learned.

Rick’s entry is great, because he picked 5 things I had not thought of. It surprised me and I can definitely relate to them. In particular getting to know the staff at the hospital, chemist and physical therapist; it’s a strange side-effect of having a chronic disease and he describes it well. By the way Rick, you are a star for setting this up and getting so many others to participate, you rock dude!

I like Kendra’s blog because of its practicality. She gets right to the point and has a wonderful positive approach.

Dana’s vlog is very cool. Not only do you get to see what a great person she is, she explains life with RA very well and you get to learn about joggling!

I like Dana Symons for telling the hard truth. Yes, it sucks to have RA but it’s good to put things into perspective as well. Very well written and well said.

Finally, Jill’s post explains how pain, inflammation and stress influence your body and using the X-men as a cultural reference is just plain awesome.

All bloggers did an amazing job this past week and I’m honoured to have been a part of RAblog week.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

Ferhaan

I like to move it – day 5 RAblog week

The gym is where I get most of my exercise. My physical therapist helps put my routine together, so every six months I do different exercises, thus my favourite exercise changes periodically. There are exercises I can’t do because my right wrist is damaged and heavy weights are not possible because, well, I have RA (duh). A the moment my exercise routine centres around TRX belts, and I really love them. I’m able to do pull-ups, squats and planking with elevated feet. Every now and then I like to lift free weights and work with the kettle bell.

In the past I used to stick to a fixed a routine and was able to record and build on it. It helped me to monitor the progress I was making. But there were always set backs and would lose 4 to 6 weeks progress. After a while this was quite demotivating and I decided to do the workout I feel like doing when I’m at the gym. This gives me the freedom to do the exercises and the amount of repetitions that feel right for that day. I often end the workout by doing some laps in the pool and in the autumn and winter I sit in the sauna for ten minutes. This routine gets me through the Dutch winters.

Exercising makes me feel good. It makes my muscles stronger, which puts less stress on my joints. It clears my mind and energises me. When I’m in the middle of a flare, I skip the gym. Sometimes it’s tough to decide if I should push myself and go to the gym or give it a miss. If I push too much I have a horrible workout, but if I get the timing right it gives me such a boost, I’m happy I went.

I’m a firm believer that people with RA should exercise as long as you find the type of exercise that suits you and that you work together with a physical therapist. It’s not easy, in particular in the first year it’s a matter of two-steps-forward-one-step-back. But as long you commit to it, it will be beneficial.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

Ferhaan

5 lessons, day 4 RAblog week

My life has changed completely since my diagnoses of Rheumatoid Arthritis twelve years ago. Looking back there are a number of things I have learned and I would like to share some of them with you:

I will never play professional football for Ajax Amsterdam. This was a hard lesson. Setting aside the facts that I have no talent, lack the physique and grace to play the game, I’m in my forties and have trouble kicking the ball in a straight line, I resigned myself to this reality about three years ago. Of course the dreaded disease is entirely at fault for me not being cheered on by 50,000 fans in the Amsterdam Arena on a weekly basis. And boy, are they missing out on something special.

Ask for help. I’m pigheaded. Ask my wife, or rather, don’t. I like to solve and do things myself even when it is clear to everyone around me that I shouldn’t. Even my amazing nine year-old son realises it. You should see the exasperated look on his handsome face when I walk through the supermarket for the third time trying to locate walnut oil or something or other: ‘Daaad, why don’t you just ask someone? Look. there’s someone right over there!’ I’m getting better at asking for help. Opening a jar, asking a parent of a friend of my wonderful son if the play date can take place at their house, things like that. Though I could probably ask for help more often, it’s a learning process I’m in the middle off. (By the way, you may have noticed my not too subtle description of the awesomeness of my boy. I’m sorry to have to break it to all you parents out there, but you are all wrong. I’m sure your offspring is cute an’ all but it is a fact (sort of) that I have the best kid in the world…) Which leads me to:

Deciding to have a kid has humbled me. RA was ravaging through my body when my wife and I decided to go ahead and try fulfil our dream of becoming parents. I was at my worst, no longer at work, in bed most of the day, medication not working as it should, suffering from side-effects. We reasoned that if we could handle this parenting-lark when I’m at my worst, it would only get better. We were right. Don’t get me wrong, there were tough times and sometimes things are far from easy even today. But because both of us backed the decision 100%, having a wonderful son has been more than worth it. It made me appreciate my wife more, not only for carrying and giving birth to our boy, but also for being a great mother while working very hard to provide for us. My son has only known me as a Dad with RA. He does not know any better. As he gets older his understanding of the disease and how it effects me, deepens. It’s a humbling experience that I’m grateful for.

Loved ones empathise with me in ways that I do not realise. I don’t share the degree of discomfort I’m in every day. I find it tedious, monotonous and repetitious. But it doesn’t fool the people close to me. If I have a bad day they can see it in the way (I attempt) to move and they can read it on my face. If I’m silent about it, my wife and son will point it out. They will give me the space I need to get through it and comfort me when I least expect it. And sometimes I’m surprised by what people do. My dear sister-in-law and brother-in-law donated part of the collection at their wedding to the Arthritis Foundation, a gesture that touches me to this day.

Saying no. I still struggle with this. I don’t like to disappoint people, but the truth is that I’m no longer the young budding football-star I once was. I have RA and there are a number of things I can no longer do. My focus is on me and my family. If we are ok, my life is ok. Everything that gets in the way of that, I try to say ‘no’ to. It’s not easy, because sometimes something awesome comes along I find myself saying yes. And then I get in trouble. Another work in progress.

Thank you for your time, take care of yourself and remember to keep passing the open windows.

Ferhaan

Naked truth, Day 3 RAblog week

Let’s not sugarcoat this: Having RA sucks. Your life changes, it’s so inevitable it should be fact. Your life will change in areas you will not anticipate.

RA will change the way you work, IF you are able to work. It will change your social life, mostly reducing it and at certain times diminishing it all together. It will change your relationship with your loved one, frankly you will be a different person they have fallen in love with. This is caused by RA changing your personality; you will go through periods of depression, have a less positive outlook on life and at times you will feel very lonely because nobody understands your physical and emotional pain. 

RA will change your day-to-day life: from your sleeping pattern to your  morning routine, from your hobbies to preparing and eating your meals, from visits to the hospital to hanging out with your best friends, from doing shopping to going on holiday, from exercising to relaxing, from deciding to start a family to raising your children. You will grieve over your old life and will have to learn to lead a new one.

Saying that RA sucks is a huge understatement, but here’s the good news: everyone can do it. RA will help you figure out who’s really important in your life. RA will help you figure out what’s important in your life. RA will help you to not sweat the small stuff. RA will help appreciate what you have, who you are with and what you CAN do. It’s the hardest thing you will do and, at the same time, the most rewarding.

It gave me the best son in the world and a deeper love for the best wife in the world. RA made me reach a place where I don’t want to return to my pre-RA life. Despite the pain, fatigue and discomfort, I’m happier with my life now. 

Thank you for your time, take care of yourself and keep passing the open windows.

Ferhaan

Never give up, day 2 RAblog week

I was standing on the little bridge just 100 meters from my house. Tears were welling up in my eyes, because I did not think I would make it home. I could actually see the house from the bridge, but RA-fatigue had taken over my body, making me believe the distance was insurmountable.

This happened over ten years ago and whenever I find myself in the realm of RA-fatigue, I’m transported back to that damn bridge a decade ago. It’s like being in a Tardis from hell (my wife and son are in the mids of a Dr. Who marathon, hence the cultural reference). Yet here I am, no longer stuck on that bridge. I keep going every day, finding my way off the bridge.

There isn’t a single practical solution to combat RA-fatigue for me. Sure there are some things I do to help me increase my energy levels; making sure I eat healthy with regular intervals, hitting the gym twice a week, getting fresh air regularly, taking frequent breaks, getting enough sleep, taking my medication and supplements on time, kicking back once in a while and many more. These are all steps that make my life with RA easier, but at the same time, it’s hard to maintain. It’s easy to give into the fatigue, simply because my body is screaming for a break. Don’t get me wrong, when it hits me hard, lying in bed a riding it out is the best thing for me. But once it subsides I have to get up and get going. And that’s one of the hardest things for me to do. My mind knows I will feel better once I start moving again, but taking that first step is tough.

I need more than common sense and positive experience to get me moving; I need motivation to drive me forward. My wife and son are the ones that give me that push. I need to get my son to school, football or wherever. He needs to be fed, he needs someone to listen to him and he needs to be loved. That’s my job. That’s my motivation to never give up. Without these two wonderful people in my life, living with RA would be like a Dalek termination…

Thank you for your time, take care of yourself and remember to keep passing the open windows.

Ferhaan

Good Day, day 1 RAblogweek

Today was a good day. I got work done. I completed the chores I had set out to do. I met some new people. I even explained to someone what, at reasonable length, RA is and what it’s like to live with. I picked up my son from school, went swimming with him, cooked and had a meeting in the evening. 

A very full day and as I’m now lying in bed, my aching body telling me I have pushed it to its limit, I realize I don’t have many of these days. These days are rare. Which is kind of sad when I think about it. I won’t be having many of these days in the future. At the same time I appreciate these days. I feel good about the things I accomplished today. Slightly euphoric even: I friggin’ did all that stuff today! That’s the medication talking…

This has always been part of my dealing with RA. Being confronted with the limitations set by the disease and being saddened by it on the one hand and appreciating the accomplishments of completed tasks on the other. It works for me. It’s what makes me a Dad-with-RA.

Thank you for your time, take care of yourself and remember to keep passing the open windows. 

Ferhaan

Belevingswereld

Laatst las ik een artikel in het personeelsblad van het UMC Utrecht over longtransplantaties. Patiënten die deze ingrijpende operatie ondergaan moeten gemiddeld zestig pillen per dag slikken, waarvan sommige voor de rest van hun leven. Ik schrok van dit aantal en begon me voor te stellen welke impact dit heeft in het dagelijks leven, naast de ingreep en herstel uiteraard. Het ophalen van een recept bij de apotheek bijvoorbeeld, lijkt me een aardige exercitie. Een grote boodschappentas lijkt me dan geen overbodige luxe en de apotheker zal ook meer tijd en ruimte nodig hebben om dit allemaal klaar te zetten. Thuis moet je de medicatie ook kwijt, zo een 1.700 pillen voor een maand past niet in een keukenla. Je zal een grote plank of kastje moeten leegmaken om hier ruimte voor te maken. Maar het meest lastige lijkt mij het nemen van de pillen zelf. In de praktijk zal het natuurlijk anders lopen, maar stel je voor dat je er twintig per maaltijd moet nemen. Dat lijkt bijna als een extra gang die je naar binnen moet werken, inclusief het vele water dat je nodig hebt om het door te slikken. Een half uur na het lezen van het artikel, stelde de reumaconsulent voor om structureel vier extra paracetamol per dag te slikken. De afgelopen maanden gaat het een stuk minder goed met me en deze aanpak zou de pijn beter kunnen helpen bestrijden. Een paar weken later merk ik dat het langzaam effect heeft, maar ik vind het af en toe moeilijk om die extra pillen te nemen. Het zit niet in mijn systeem om op andere tijden pillen te nemen en bovendien baal ik er nog steeds van dat het nodig is. Ik heb een aantal activiteiten moeten inleveren en die zie ik me voorlopig nog niet oppakken. Af en toe denk ik aan die longpatiënten die ladingen pillen wegslikken en maak ik mezelf wijs dat het voor mij dan meevalt. Maar in mijn belevingswereld is dat nog niet helemaal het geval.