Thursday, 23 August 2018

Anxiety & Fears


Dear Readers,

Despite my painful legs, yes they're still continuing, but my appointment is on Tuesday and then I can hopefully trial new meds for my legs. I'm really hoping my body takes to them. My hopes are high, so fingers crossed!

For those who know me well, will probably be shocked at this blog, as I am usually quite a confident girl and won't let PH stop me! Anyway, I went out with friends and had a super time. However when we went for a meal, I needed the toilet, but I had a sudden fear of asking the restaurant manager for the radar key to the accessible toilet. I've never been like this before, but I think as I wasn't feeling very well that day, the thought of rejection was too much for me to cope with at that moment. I do have my own radar key, but some days when I've swapped handbags it's not with me and this was one of those days.



So I asked my husband to come with me to ask for this key, as I knew he wouldn't have any whys? what for? or any weird looks and therefore I felt "safe" that I would get the key. So guess what, yes I got the key and no questions were asked, no second looks, just the key handed over to me! Success! 

Pulmonary Hypertension is invisible for me and I feel I've had my fair share of ignorance and abuse and that day, I knew I couldn't handle it. I was very lucky to have Terry with me that day, but sometimes it is just me and the fear of asking can sometimes get too much that I have made myself struggle to the nearest toilet. 



I know this all seems I'm making a mountain out of a mole hill, but I really didn't want to turn a simple situation into a big deal. In past situations, I've had restaurant managers say, "no, they're only up the stairs" and sometimes I don't have the energy to argue. Some days I do and explain that I can't walk up stairs, and I've had to get the friend I'm dining with to support me. It's so horrible to be in a situation like that and getting the reluctant look from restaurant managers when they finally hand over the key. I can't wait for the sign, 'not every disability is visible' nailed on most accessible toilets. 

These fears don't just stick with going to the toilet, but when I park in a disability bay. When I am not up for any confrontation, due to feeling so unwell on the inside, I now sit and wait in my car. I wait until there aren't many people around me and then I get out sheepishly and sometimes pretend I'm texting, so I don't lock eyes with anyone, even though I know I deserve my badge!

I feel, I really shouldn't have to be made to feel this way! It's a shame that it has come to this, but what else can I do when I feel so ill inside but look so well on the outside. As many people with invisible illnesses know, it's very difficult to live a normal life at times.



Living with Pulmonary Hypertension isn’t easy! One day I can be visible and another day I can be invisible! The chronic pain, the migraines, the fatigue and severe breathlessness makes everyday life difficult. Despite having PH I am all of the words around me! I may have PH, but I won’t let it define me! I am foremost a wife, a daughter and a fur Mummy! I am a PHighter and always will be until I have my double lung transplant or a CURE is found! PH lives with me, not the other way round!!

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