​Fatigue is one of the major symptoms of owning ankylosing spondylitis

Fatigue is one of the major symptoms of owning ankylosing spondylitis.  

Yesterday, I had an appointment at the ENT specialist clinic at the General Hospital. The total time for the appointment was about 4 hours—about 3 hours of sitting in a horrid and uncomfortable chair, and then one hour standing, and both activities are torture for an ankylosing spondylitis patient.

I believe hospital administrators and hospital planners, and clinic managers or administrators, do not even consider it (the consequences for AS patients) when they think about how they’re going to arrange and plan a medical clinic waiting room, or how they are going to manage their appointments.  

When I was in the United States, and being treated for my ankylosing spondylitis, I would have a specific time for my appointment, and when an appointment was set for 9:30 a.m. I would show up a little before 9:30 a.m., and a short time later, I would be sent in to see the rheumatologist, who would take care of me. But here, at the general hospital, they tell 50 or 60 patients to come in at 8 a.m. and it is first come first serve, and the clinic doctors only start seeing patients about 9 a.m. So if you are one of the unlucky ones to show up at the clinic at 8 a.m. which is your scheduled appointment time, you will see that about 40 people are in front of you in the line and that’s really bad news for someone who has any kind of arthritis problem—I was number 37.  You will be sitting there for hours, and I’m serious about this, for any ankylosing spondylitis patient, that in my opinion, is unacceptable, totally unacceptable.  

Yes, I understand the reason why they do what they do at the general hospital, because they are totally over loaded with patients and the system can’t handle it in an orderly fashion, and that is why they tell 50 patients to come in at 8 a.m. and another 50 patients to come in at 10 a.m. or however they do it.  Nevertheless, I’m telling you that it doesn’t work well for people who have to sit in the uncomfortable chairs for hours upon hours, waiting to see a doctor, or having to stand because there aren’t enough chairs in the waiting room for everyone to sit down, and that’s equally as bad for someone with ankylosing spondylitis.  

☆I do appreciate and I’m grateful for the service of the Penang General Hospital because it is unlike anything you would ever get in the United States, and I am not bitching and moaning about the Penang  General Hospital—I’m going to praise them on this note:  Who would ever get to see a specialist in the United States for 5 ringgit?  That’s about 2 US dollars,  and the answer is no one, never ever in the history of medicine in the US, unless you go back to the 1800s probably, then, well,  you might be able to see a doctor, and then pay that doctor with two chickens and a bucket of corn, or something like that.  

Oh, and guess what, medication at the general hospital is FREE!  Can you imagine that, people in the United States or in the European Union or wherever else, YOU PAY THOUSANDS A YEAR for prescription drugs!  At the Penang GH  the medicine is free.

 I am totally grateful for the great opportunity there is to go to the Penang General Hospital for this kind of treatment and services.  However, what I’m saying is that the way the service is provided for certain special populations,  especially those people with arthritic diseases, such as ankylosing spondylitis, it is not ideal for them because sitting and standing for any length of time, are some of the worst activities that an ankylosing spondylitis patient can suffer through, but every patient is pushed into the same category— the “sit and wait category”.  

Currently, there’s no classification of patients in a waiting room environment.  Will this ever change at the General Hospital in Penang, or anywhere else in the world?  I don’t think so—I don’t think there are enough resources and manpower to do such a thing where you can classify specific patients by their disease and/or pain score, such as those with arthritis problems, who could technically be directed to a different waiting room to see a specialist.  And then, the general population with normal health can also see the specialist, but they may be directed to another waiting area, where they may need to sit and wait a longer time because it doesn’t bother them in any sort of medical way. 

☆ Of course, you would hear outcry from the “Normal Health” population saying “It is unfair!” And my response to that is “Go insert yourself into an ankylosing spondylitis body and suffer while sitting and standing in uncomfortable and painful postures while waiting to see a doctor, and I can guarantee that you will be wishing you could crawl your way out of the “Waiting Room Hell” BEFORE you go crazy ape bonkers due to pain and suffering!” 

 Extreme FATIGUE like I experienced today, is the outcome of over exertion for AS owners.

 You see, people do not really realise that the activities an ankylosing spondylitis patient does one day causes them pain and suffering and hell, the next day, and I am very experienced in this and know exactly what to expect the next day after walking too much, like the 4 kilometres I walked yesterday.   And sitting and standing 4 hours at the hospital sure didn’t help at all.  I knew today was going to be really bad regarding my fatigue.  

One of the main symptoms for someone owning ankylosing spondylitis is Fatigue.  What happens in my case, is that I find it very difficult to get out of bed because my mind is so busy with pain and exhaustion that I just can’t move, and I just don’t want to get out of bed because I’m so exhausted.  But of course, once an ankylosing spondylitis patient starts to move, they will start to loosen up a bit.  Therefore, there is an AS conundrum:  Spondies can’t move due to fatigue, but they must move due to AS!  

I certainly don’t know everything about AS, but I do know my own body with AS, and I assume at least a little bit, that many AS owners have similar thoughts and experiences.  When I go beyond my physical limits, which happens a lot, I know that I can expect an ass-kicking from ankylosing spondylitis, especially during the next day, and maybe even the day after that.

☆I’m just mentioning these personal experiences because it may help other Spondies know that they are not alone.  Many people with AS may be afraid to speak frankly about their bad experiences with medical care, or, bad experiences due to poor medical planning, or poor medical administration, but I think it is essential to have a voice for AS owners, and I’m not claiming to be that voice, and I’m not claiming to speak for all AS patients, but what I do, is speak my mind, and maybe that helps the AS community in some way.



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