Monday, 10 July 2017

Chronic Pain with PH

Hello Readers,

NB: This blog post is of my own opinions and experiences and must NOT be taken as generic for everyone or as medical facts or advice.

Chronic Pain - What is it? Chronic Pain is long - term pain that lasts longer than 12 weeks. The physical effects of chronic pain include, tense muscles, limited mobility, lack of energy and changes in appetite. Emotional effects include depression, anger, anxiety and fear of re-injury. This fear may hamper a person's ability to return to normal work or leisure activities (cited: http://www.webmd.boots.com/pain-management/guide/pain-basics)

As part of my heart condition, I, like many others have to deal with chronic pain.

My pain presents itself in many parts of the body, mainly the limbs, but also my entire body. The pain can be so severe that I am unable to move. I have been told the reason of my pain is due to lack of oxygen getting to my extremities. There are times where I have to curl up into a ball, as any other position or movement is agonising. This severe pain has brought me to tears, and has brought me down to feeling disillusioned.

I will never be able to cure this pain, and I control it through very strong painkillers. However, even though I take 3 tablets a day for Pulmonary Hypertension, I don't like to take my painkillers too often.

These painkillers are the strongest dose allowed for my body and so I only take them at night time, as they help me to sleep through the pain.

When the pain is so severe I go around in my wheelchair and scooter. My scooter is great and still gives me the chance to go out an enjoy the activities I have planned, like seeing my friends.

Again, chronic pain can be invisible what with the amount of medication a person can take to help ease it. This being another issue I continue to deal with. As much as I say I like having an invisible illness, when I get grief from strangers, I wish I had something to prove my illness. But why should I have to prove my illness, I wish I was healthy like the person who is being ignorant towards me at that time.

However when I have to go in my wheelchair, I feel like saying, look I am ill, I deserve this badge, but I also feel so embarrassed! Embarrassed because I feel I shouldn't have to be in this wheelchair at my age or just generally embarrassed.. is that wrong?! I suppose, I just haven't got used to the situation! I like getting back to PH being 'invisible' for me.. is that wrong? Should I feel lucky that I'm able to have a condition where some days I can be 'invisible' and others I am 'visible'? Many would answer yes, some no, but a question that I ask myself a lot!

Anyway, I know whether I'm in or out of my wheelchair, I need that badge as I can't walk far due to having an incurable heart condition, and I shouldn't waste my time having to explain it to those who don't know me! Some days I comment and others I walk on. It all depends on if I have the energies to say something. To be honest ignorant people can jog on in my life, and if they want to be rude and disrespectful, I feel sorry that they haven't anything better to do with their lives.

Things seem to have got better in that respect, since having a sticker saying 'not all disabilities are visible' - whether this has had a positive effect, I don't know, but I love having it there!


I am lucky that I am still able to work, not a proper 9-5 job, but work enough that suits my health needs, supports my life and live comfortably with my husband. I love my job and know that each day I get to help other people.

My pain never goes, but luckily many days are good compare to being bad. I will go through episodes where I will suffer with this pain for many months. However, after all this, I am stable, and I go out every day of my life and put a smile on my face and I will not let this pain or heart condition stop me from doing what I want and the things I love in life - Living Life To The Full!!


Thanks for reading!


A reminder of what is Pulmonary Hypertension (PH)

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