First of all, I apologise for the radio silence. The past few weeks have probably been the hardest few weeks of my life when it comes to my mental health, so I didn't want to write something for the sake of writing it when actually, I've either been feeling 'nothing' or I have been feeling overwhelmingly sad to the point I haven't been able to see any way out.
I have had 4 sessions with my counsellor now and on a side note, I'm not sure I could put into words what a wonderful person she is. I don't feel like a number to her or just another client. She fills me with so much confidence that she genuinely cares about my well-being and wants to hold my hand through every step of this journey. She knows exactly how much to push me, she knows when to just let me cry, she knows when it is appropriate to put a reassuring hand on my hand and she gives the best 'it's going to be OK' hugs!!! All things you may think, she's a counsellor, it's her job surely she should be doing these things, but believe me it can take time to find the right person that is in sync with your needs.
I do feel sorry for this woman though... when I had my initial consultation and felt that relief that I had found someone that I felt I could open up to, boy did I open up! I went to my first session and took about 5 cans of worms, and opened all of them up at once! I panicked, I thought if I don't get all of this out now, I never will and I need this person to know everything. I thought if she knew everything all at once she would be better equipped to help me and make this pain stop. Although, yes there are other issues that need to be dealt with, the biggest thing we have agreed we need to tackle is the PoTS diagnosis.
We established that since my diagnosis 6 years ago, I have been stuck in a cycle of grief. The main stage I'm stuck in is denial. She used a wonderful analogy... she said it's like someone has come along and put a puppy on your lap (the diagnosis), but you're petrified of puppies and someone has told you that this is your puppy for life now, and you have to love it and nurture it and take care of it. This puppy is on your lap pleading with you to stroke it and love it but you're holding your hands away saying 'NO!' and trying to push it off your lap because you don't want it and you're scared of it. Absolutely I'm doing that! Before this diagnosis, I had a career that I was happy in, I was able to be the mum I wanted to be, I was able to be the wife I wanted to be and was able to anything I so desired! I ran my own business, albeit, a solo business as a domiciliary carer and I had huge aspirations to expand and turn it in to a company with the hopes to change how care was provided and how staff were treated, and that is when this boulder came crashing down and blocked my path.
What has happened over the course of these 6 years is this arsehole of a condition has teased me and tortured me. Upon diagnosis, I was bed bound and in a wheelchair for months, so I was unable to carry on working. So I re-evaluated, if I'm going to be in a wheelchair now I need to rethink my career and look at something that I can do in a wheelchair, so I went to college and did an accountancy course and gained my AAT level 2. During that time, we had finally found a Doctor who was able to find the right medication and got me back on my feet living a symptom free life again. Re-evaluation was needed again as I didn't enjoy accountancy and if I'm honest, how I passed was beyond me, because that shit made no sense to me at all, I was winging it through that whole qualification! I had a few jobs in call centres as they were jobs that could be done sat down and I was finding the condition very unpredictable. I would be symptom free for a few months and would be able to wean off of my medication and I would be given hope. Then the bastard would rear its ugly head and say 'only joking!' and I would have to go on all my medication again.
Dan got the job that relocated us to Wales. I knew this was going to be hard and I knew I was going to need something for myself to stop me from being swallowed into a pit of loneliness and depression. I needed something that would enable me to meet new people and at the same time give me something that was mine. Nursing. I have always been passionate about nursing but living in North Devon and having children so young meant I felt I was unable to pursue that because we were so far away from the closest university. Moving to Wales blew that door wide open as we were now in such close vicinity of 3 universities! Fantastic!
PoTS was still there, however I was leading a normal life with medication. I was accepted for a place on the nursing degree on the condition I passed my access course with the satisfactory grades. I acquired the right grades AND fell pregnant. We had been trying to conceive for about a year and I had been trying to come to terms with the possibility of not being able to have anymore children. So, of course, when I channelled my attention into going to university it happened, which wasn't a problem. I deferred my start date and concentrated on the pregnancy.
I was closely monitored throughout the pregnancy and with the medication I had minimal problems. The birth went smoothly and my post birth experience was far better than when I had my first baby. If you have read my previous blog titled 'What's the matter?' you'll know what happened 6 days after giving birth to Evie and it eventually resulted in me being medication and symptom free. Great! I was now even better equipped to fulfil my dreams. I gave birth to Evie, October 2017 and started University in March 2019. That whole time I was symptom free and continued to be symptom free for the first 5 months of the degree. That is when clearly the stress and the demand on my body from juggling assignments, exams, full time placements, two kids, being a wife and the house sent me into a huge relapse.
That's fine though! I'll start taking all of my medication again and I will live a normal life again and I will continue with my degree.... This was in July 2019 and we are now in February 2020 and I am on all the medication I was on previously plus more and although I'm not bed bound I am still struggling massively. I'm still nearly passing out probably 75% of the times that I stand, the fatigue is crippling, way worse than I ever remember it being.
All my symptoms that I live with daily:
Dizziness
Palpitations
Tachycardia
Headaches
Fatigue
Shortness of Breath
Chest pain
Abdominal pain
Low blood pressure
Sleeping problems
Generalised weakness
Bladder dysfunction
Light and sound sensitivity
Easily overstimulated
Heat Intolerance
This time round I'm finding the condition so much harder to manage. I can't understand why I'm not back to normal now I'm on all my medication. I don't want to accept the way I'm feeling and that the condition is taking everything away from me again. It is so hard to have such an active brain that is so ambitious but a body that completely fails me. It's not fair and I'm not OK with this!! So this is one of the many reasons I have sought help now.
A lot of people, myself included, become so determined to not be defined by our conditions, but is this actually a healthy outlook? All I have done over the past 6 years is try to push it away and pretend it doesn't exist in a desperate bid to be able to carry on with my life how it was before I was diagnosed. One thing I have learnt from counselling is, actually, this condition is mine... I have been given this diagnosis and until I learn to accept it and embrace it I'm never going to be able to move on.
With the help of my counsellor, I need to stop looking backwards at who I use to be and what I wanted to achieve and turn around to face the person I have to be now with the PoTS. It isn't going to be an easy ride, and I still don't actually know how I'm going to turn the other way and start walking this new path when all I want is the old path.
Who's coming along for the ride?
Instagram _chronically_living_
Facebook: PoTS | Am I Invisible?
I so relate to this. I've had POTS at varying degrees of severity for almost four years. I have times when it's completely gone and times when it leaves me debilitated. I had been in denial about it having come back this summer to the point I wasn't doing anything to treat it, and now that I've acknowledged its presence in my life, I'm finding better ways to manage. I keep wondering why I didn't take these steps sooner! But it's definitely a struggle accepting that this might be my life from now on. I'm glad you're finding ways to move on while also accepting this diagnosis.