Aw well I’m really glad to share anything helpful at all @Alex217, especially in non-creepy ways I should add that although I am a psychotherapist I’m not here in that capacity—I’d never share so much personal stuff with clients, they’d likely be horrified! Perhaps in your case, if it feels right, being something of a “wounded healer” yourself might help your patients trust your judgement better knowing that you have lived experiences that they can relate to. But for now, focus on your own healing. Leave the empathising for when you’ve got your head around all this.
I’m really sorry to read of how your sleep is being affected, I also know insomnia well. It’s to be expected with these understandable worries you have. What helps me is trying to stick to a bedtime routine (how boring), and seeing what happens each night, but not to berate myself when I inevitably don’t sleep the whole night through. Hopefully your shifts aren’t affecting your sleep routine.
Don’t know if you’re into tech but I got a fancy Oura smart ring earlier this year to see what was going on with my sleep and other health markers and it’s been super useful. My haematologist actually tested me for apnoea in case that was affecting me, but thankfully not—apparently apnoea can affect oxygen levels in our blood which in turn can affect how we respond to treatments (sure you know understand this better than I can paraphrase). So now I know what sorts of patterns I have with my broken sleep and can plan a bit more around that thanks to having data showing me how rubbish it’s been. Or not—I had an excellent night of sleep on Sunday and really felt it! Maybe seeing it in data might help you take the emotional edge off those nights where it’s hard to nod off. I used to get so angry about sleeping poorly but now I feel more like is it any wonder?!
Something that helps me get to sleep more easily is being physically tired, which is obvious but if I haven’t moved around much during the day then I’ll likely find it harder to fall and stay asleep. Not having enough exercise also means I’m less likely to have worked any stress hormones out of my system before bed, which might resonate with you with your current worries.
Hiking and doing Apple TV Fitness yoga helps me burn off energy and tires me out. Sometimes a bit of meditation before bed can help too. Getting bright light into my eyes in the morning to jolt my circadian rhythm into day mode means I’m more likely to feel sleepy earlier in the evenings and is mentioned in meta-analyses as a beneficial way to offset cancer-related fatigue.
Let us know as you get your test results back and, although I’m sure you’ll understand them and have colleagues to talk them through with, you can come here and share how it really feels. Really glad you found the forum @Alex217!
It really is. I mustered up the courage to ask for help from my GP who is willing to provide me with a short term prescription of melatonin to see if that would help. I can’t use the sleepy histamines due to other medication I’m currently on. But it’s worth a try to revisit it and hopefully it helps this time.
I’ve also agreed to look into some talking therapy to see if that can help aswell. Thank you for the reply
I promise it’s not creepy! It’s really helpful in fact! Haha that they definitely would be definitely, it helps a wee but to know how scary these appointments can be and how best to help them adjust treat themselves etc.
Yes I’ve definitely tried to stick to a more consistent bed time roomtime whether I think I will sleep or not. I just hate it when it gets to 2/3am I haven’t slept then I’m up at 7am to start the cycle again. I’m somewhat lucky with my shifts I only work short shifts due to another chronic health condition so it helps to take a bit of the burden off knowing I’m not running around for 13hrs. I’ve been “lucky” in a sense that I’ve been off the past three weeks due to a flare up of my other HC and catching cold/flu like symptoms. But I was to return to work today however this is/has taken a hit on my MH so I will be taking the rest of this week to hopefully get my head around it a wee bit more and to sleep.
Yes I am! My other HC is POTS which I rely on my Apple Watch heavily to help with my HR and syncopes. I also love that it analyses my sleep all my vitals during that time!envious that you had such a good night! I haven’t in a while and as you say you can really tell the difference in doing so! Yes I think I will dive more into my health app and look at the data more and to see what I can change/adapt for now.
I am trying to build my excercise back up it took a bit of a hit as I’ve been in and out of flare ups with my POTS
But I had my ultrasound today, the good news is it seems to be of normal size around 10cm. Which is brill news as it’s one less thing we have to fix
Hi @Alex217 perhaps be very kind to yourself and slow and steady wins the race.
Good news about your ultrasound, In think a celebration is in order.
Look after yourself and please do keep posting
Oh that’s excellent news about your normal spleen size @Alex217, one less thing to fix (or worry about), like you say. When I heard my spleen wasn’t abnormal it was quite a relief! That was before I knew they could start producing blood, which still grosses me out for some reason. Yes time to celebrate like @Erica says
Really sorry to read that it’s POTS you’re contending with already, it sounds like it can be hard work, and rather random in when it presents symptoms, if my understanding is correct. A close relative of mine has it too and it somewhat derailed her career plans for a while. I understand how POTS alone is a big burden and can affect activity. I read somewhere recently that an Olympian swimmer has POTS and apparently her swimming actually benefits it, or at least is a safe way to exercise. Wonder if that might be a way to burn off some energy more safely for you? I’m sure you know your limits and ways to not push the POTS side effects.
So great that you’ve already got a device to check your sleep with and so on. My other half uses his Apple Watch mostly for health stuff too, but the walkie talkie function looks almost fun enough for me to think about getting one!
I love that you’re taking time off work for yourself and to sleep, time like that to recuperate and get your head round stuff is vital—especially with your current concerns. Perhaps you’ve considered if there’s any link between your POTS and the potential diagnosis you’re being tested for, might be worth raising it with your haematologist if and when it seems appropriate. The more health information we share with our specialists, the more links can be made between seemingly disparate issues, as I’m sure you know from your patients.
Try to enjoy your break without feeling guilty about taking time for yourself, and find some enjoyable distractions when the anxiety gets too much. Don’t forget the forum is right here for anything that comes up for you @Alex217.
Exactly that. And I agree it is still gross what it can do
Yeah it’s not the easiest of conditions to deal with and currently in a flare up which is worsened by stress, being ill etc, I agree it has completely derailed my life aswell I had to put my true career dreams on hold due to it and the high risk of fainting I’m hoping we can eventually get it under control but currently we cannot yes I was having this chat with my partner about swimming and we’re currently looking into local places to do so, so hopefully it will help with pots and tire me enough to help with my sleep.
Yes I am definitely going to speak to both of the specialist I have an appointment with my pots specialist this month and I will update him further on what life is currently throwing my way in hopes we can come up with a plan to help both things or atleast get them to communicate with eachother.
I had a conversation with my boss on my return to work yesterday we’ve agreed that I will have to change my speciality as their is a wee bit of conflict of interest especially if I need treatment further investigations/procedures my ward would be were I will be/ who I would contact. So we’re currently looking at a change of ward/department and I should hear back on tomorrow’s shift about my new allocation. But my guys here have been amazing and very supportive.
The time off was needed the adjustment back into work has been extremely hard, harder than I thought it would be sadly.
But thank you for being a listening ear and supportive
I’m not sure if yall would know but I’ve received some standard blood tests back one being the full blood count and they haven’t tested my platelets, hb or white blood cell, would the doctor get notified or should I ring them and see if they want to resend them as it’s a pretty key test for Essential thrombocythemia (ET)
I’ll reply more fully soon @Alex217 but just wanted to say I’d likely ask for your platelets and haemoglobin to be checked if those results don’t come through in a day or so. Their numbers are used for figuring out our haematocrit level, I believe. Always the first number I look for after blood counts
Yes I’ve managed to get through to my haems secretary to re order it hopefully, she is going to call me tomorrow regarding if I need to repeat it but speaking to another oncology doctor on my ward he agrees I should re test it. Yes exactly it was the first test I looked at aswelll
Follow up- her secretary phone me back this morning and said the haematologist had a look at my results and quite a few of my tests have come back as incomplete so they’re resending me the blood card forms to have them re done
I’m just praying my genetic testing is good enough
Oh @Alex217 I am so sorry that your tests have to be re-done, more waiting and not knowing.
Perhaps, and I know this is not easy, try and divert your mind.
Please do let us know how you get on and really look after yourself.
Hey there @Alex217, this sounds like great news in terms of clarifying results, well done for checking and asking for them to be done more thoroughly. Hopefully it’s a relief that your haematologist concurred with you about those missing results.
This sort of advocacy has helped me feel a little more in control of such uncontrollable worries with my own treatments, although I appreciate it can be hard work—it’s not always as easy to look after ourselves as it is others, right?!
It’s no wonder going back to work has been a tricky transition—you have a lot going on, which I imagine is very distracting. Maybe focusing on being busy at work can take your mind off everything else a little? You could even plan a diverting hobby for your spare time—I’ve been known to ‘screen’ film series at home where we watch themed stuff over a few nights, or tie it in with films being released at the cinema or via streaming. And don’t forget other treats, I’m sure you have favourite activities you can plan for.
As for juggling the POTS and whatever these current tests might end up finding, maybe the last thing you’re feeling is confident in your ability to manage it all. But in those moments of worry look at how well you’re already advocating for your needs and thinking ahead about ways to continue working in a field you show passion for. I’m so glad your colleagues are supporting you, and I really believe that your lived experiences will benefit your healthcare expertise.
But for now, it’s that patient wait for tests and results again… no wonder we’re called patients! Remember to share your anxieties with loved ones and try to let any minor worries go for now. Do please keep us posted about what comes up @Alex217, the forum is here to support you.
Alex217 Just wanted to say Hi. I fully understand juggling more than one condition. It can be frustrating as each consultant views each condition seperatley. Good to hear that your bloods are getting redone. Hopefully you will not have to wait long. Returning to work with health issues is never easy and I hope you get a balance soon. Best wishes. Liz59
Still having a lot of hiccups with my blood tests patiently waited for them to be posted they wasn’t I followed up on Monday whilst in work they said to wait a few more days. They still have not appeared and I’m waiting on my access to be granted so I can print them off however my manager has said if they don’t come on Monday I can grant her permission to look and then print them off so we can do them which leaves just over a week for the results to come back
A you said it’s a definite relief to know that they are now aware and can action on that.
Yes the transition back to work has been a little hectic these past few weeks, being open and honest to my manager and my preceptor has worked wonders to know that they are there for me in both a personal and professional view.
The next week I have two appointments coming up one with my pots specialist the other for results of my testing with the haem.
Yes definitely focusing on work others, tv and my games has worked an awful lot more than I thought it would it distracts me from thinking the negatives or letting my head spiral with all the possibilities
Thank you Duncan and as you said it’s really played quite a vital role in my nursing understanding how traumatic and lonely it can be to even just be going through the potential diagnosis and treatment plans, it helps me cater my care plans to each person knowing I have a wee but more insight than most of my other colleagues.
Oh definitely the main reason we are called patients
I am I’m slowly opening up more to my partner and family about worries or letting them know when I’m having a bad day of my pots or symptoms yet to have a diagnosis. This has been the hardest part the actual letting myself be cared for but it is a work in progress that sadly won’t happen over night.
Hi, thank you for the message
Yes it’s a struggle balancing all my appointments and keeping each of them up to date with what’s going on. And as you said most focus on their own speciality but I am very grateful especially for my pots specialist he was the ones who pushed my GP to look into blood results and the referral to my haematologist, so I’m so grateful he took me serious and didn’t just brush me off like past doctors have done.
I will get my results in just over a weeks time so hopefully it makes planning shifts and my life a little easier have some knowledge on what’s happening to my body.
And definitely it’s been a struggle just with my pots diagnosis and now with this potential diagnosis it makes it a lot harder as it’s forcing me for once to actually listen to my body and use my accommodations I have in place to actually help rather than pushing my self to the limits not using what I have available in place to help me
Alex217 finding the balance with not overdoing can be tricky. Good to hear you will have your results in a week, the waiting is hard. Fair play to your pots specialist for getting you the referral you needed. It can be very demoralising when you are not listened to or are dismissed. Best wishes for your results and look after yourself. Easier said than done.
Oh I’ll keep my fingers crossed you get them tomorrow @Alex217! It really is a lot of waiting for and anticipating test results, I’m sorry you have to tolerate all that. But like others have said, being open about our needs is such a great way to be. Especially with loved ones.
Do let us know how you get on. Not too long to wait now!
I should add that although I am a psychotherapist I’m not here in that capacity—I’d never share so much personal stuff with clients, they’d likely be horrified! Perhaps in your case, if it feels right, being something of a “wounded healer” yourself might help your patients trust your judgement better knowing that you have lived experiences that they can relate to. But for now, focus on your own healing. Leave the empathising for when you’ve got your head around all this.
definitely, it helps a wee but to know how scary these appointments can be and how best to help them adjust treat themselves etc.
I’m hoping we can eventually get it under control but currently we cannot 
