So, I went to see my GP this week. Why? If I'm honest to simply lose my shit! When I was sat in the waiting room guilt smacked me square in the face. Why am I here? Why am I wasting an appointment that someone else could have had, because lets face it they are not going to do anything for me today, they are going to turn me away and tell me I need to wait to see my consultant (which I do not have an appointment for).
A little background on why I feel going to my GP about anything related to my PoTS is a waste of time. When I have visited my GP previously about my PoTS, they have looked at me confused, had to google it (I don't expect a Doctor to know EVERYTHING, so this isn't the problem), then printed out the fact sheets about PoTS and given them to me and told me to go home and read them! On other occasions if I have presented with symptoms that are concerning me that in my opinion are not related to my PoTS, if they have been unable to figure out what was wrong they have blamed it on the PoTS. If I challenged them and asked them what PoTS is thought they would go and print that fucking fact sheet off and give it to me after reading it themselves, because they in fact do not know what my condition is but are confident to blame my symptoms on the said condition they know nothing about! Logical? My personal favourite though.... living with a chronic illness, as many know has a detrimental affect on one's mental health. This recent trip to the GP wasn't the first time I visited and lost my shit and had a big breakdown (and I don't expect it to be the last!). In the early days of my diagnosis when I was bed bound and in a wheelchair with a 2 year old daughter I went to my GP and begged them to speed up my appointments, or refer me to a consultant the specialises in PoTS, to which he replied 'well if you had plenty of money you could pay privately and you could see a consultant this week!' Not fucking helpful, I don't have the money, I have lost my job and living on one income to support 2 adults and a child so no I don't have money to see a consultant this week but thank you so much for clarifying that! Now, that comment wasn't the best he then proceeded to tap me on the head and said 'I think what we need to do is fix you up here and then you will probably get physically better' First off don't touch me! ESPECIALLY in such a condescending way. Secondly how dare you! How fucking dare you try to insinuate that my physical condition is a direct result of my mental health. I have a mental health problem due to the sudden life altering diagnosis that has caused huge limitations that I am having to adjust to. Anyway don't get me started on Doctors opinions on 'what came first, the physical or mental health condition' that's for another blog post!
So, that's the background on why I felt I was wasting my time being there. I was pleasantly surprised to find it wasn't a waste of time though! The GP I saw was lovely, she empathised with me and listened. She shared my disgust in the fact my blood results from July, when I was hospitalised, actually showed an iron deficiency and they chose to do nothing with that information, they chose to dismiss me and let me continue to suffer. She shared my confusion that when I was finally seen by my consultant in November that I was only given a 2 week course of Iron, AND no plans to have my bloodwork done again! So, the obvious first step she suggested was to have my blood tested. She advised if my bloods came back clear then she would write a letter to expedite my appointment with my consultant.
I saw the same Doctor for the results of my blood test. She explained that although one of the 4 tests on iron levels came back slightly on the lower side, the slight deficiency would not account for the extremity of the fatigue and lethargy I'm experiencing. Concluding that she thinks the majority of all of this is indeed down to the PoTS or possibly another underlying condition under the dysautonomia umbrella. I found this so disheartening, I honestly thought that all my iron levels were going to be rock bottom and an intense course of iron tablets would get rid of this fatigue and lethargy. I will still try and stay positive that it will help me function at least a little bit better but I'm also filled with dread that I'm going to have to live my life forever, trying to get through my day with weights on my feet. I have a 2 month course of iron tablets and she has still written a letter to expedite my appointment with my consultant.
Fingers crossed I will get somewhere with my consultant. I have utilised my AliveCor ECG monitor so she is going to have access to readings showing SVT and a lot of irregular ECG's. I'm hoping she will be able to empathise with me that living with all this tachycardia and irregular rhythms among all the other symptoms and come up with an action plan to help!
If your sat thinking it isn't worth seeking help, it is, it always is, I promise. Don't ever let anyone think that it's OK to leave you to suffer. Even if it means you go for that second, third, fourth opinion, you keep going until someone is concerned about your quality of life. For a lot of us this condition leaves us in a strange in between state of not being classed as fully disabled and not being fully fit. That in between stage is a really difficult place to be, especially because we don't tick 'normal' medical condition boxes. It means we have to fight so much harder to be heard, to be believed and to be cared for. I know some days you are tired and you feel like you can't fight anymore but I promise you, you can.
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