Teetering on the brink

EatingBeans

Very sad to report that the fatigue came crashing back along with severe headaches and nausea. 😭 The TN is also hurting and serving as a big reminder of why I take the medication for it. I’ve technically ‘worked’ today but that is actually a complete lie. I would have just called in sick first thing if it wasn’t for the fact that it was release day today and it would have been a poor show if as a Delivery Manager I ducked out of my first release day. So instead I rested as much as possible next to my computer and stayed in touch with the team via Teams on my phone. 😞 I feel so bad but I thought better to at least be available if they need me (which they really did yesterday). Now though, I think I am just too spent to make it through tomorrow. 😞

One thing I did manage to do today was take the dogs back to the field as planned. They had an absolute blast and had definitely realised it is ok to be away from mum in this place so they raced around the 2acre field by themselves while I just sat on a sheltered bench next to the van (other than picking up after them of course). The fresh air and stress free space is totally worth the money. I have booked in a regular slot for the next few weeks as I genuinely feel like it is as good for me as it is for the dogs. I’ve also managed to find an easier route to drive to get to it by going on the motorway. Distance wise it is over twice as far but it means less stopping/starting/turning so it makes the drive less tiring. Yes, I am now literally planning my driving around how many gear changes I have to do! 🤦‍♀️

So yeah, sadly it seems it wasn’t all just side effects of the medication. 🙁 I finally started looking up ME/CFS today and sadly it is all sounding very familiar. As is POTS, which is commonly diagnosed alongside ME/CFS. 😢 I’ve avoided any suggestion of ME up to now as I have memories of a girl I knew who had to use a wheelchair due to ME and any suggestion of that being what I might end up facing is just too scary by half. But, there comes a point where even I can see CFS makes sense. The dd’s have been suggesting it for a while but clearly I’ve been in denial.

So, back on the TN tablets I go. 😞 No point suffering the TN more if the end result is I’m still struggling. The thirst thing still perplexes me though. I have stayed super thirsty for a few days now so I am going to see if that changes as I start back on the tablets. Either way I’ve decided to consciously make myself drink more water because dehydration wont help either way.

EatingBeans

Oh it just gets better. I had an awful night in so much pain, finally made it down the stairs this morning, and the vomiting started. I managed to compose myself(ish) then foolishly bent down to get something out the kitchen cupboard to try and get something to eat to settle my stomach and ended up having to lay on the kitchen floor as I felt too awful to stand up straight again and just sitting against the cabinet was too exhausting. dd1 came to rescue me bless her, brought me a bowl, biscuits (to try and settle my stomach), some painkillers and water to sip, and after 10minutes or so I was able to crawl to lay on the sofa which is where I am now. No amount of wishful thinking is going to make it possible for me to work if this continues so a DMP might have to be brought back onto the table. 😢

oceanspirit

So sorry to read what you are going through. It’s not easy living with fatigue plus other symptoms and then having to fight with medical professionals as well, when your precious energy would be better spent on looking after yourself.

Thank you for mentioning Field Doctor meals in a previous post. I looked them up and am now using them as I currently have carers after an unplanned 10 day stay in hospital. It’s good having all the veg in the one meal - so easy for carers to pop in microwave and way better nutrition than supermarket ready meals. I find their website difficult to navigate though. Are you still using them?

It’s great that you’ve found a good place for the dogs to self exercise and a bonus that it gives you some peace to help your overall wellbeing. I hope you get to the bottom of your symptoms soon and that you are able to hang onto your job as it sounds a good fit for you and the team you are working with.

EatingBeans

H @oceanspirit , I am so glad to have helped you find Field Doctor, they really are quite different to normal meals aren’t they! I am indeed still using them, but after a while I found I craved other food so I mix it up a bit. I’m with you on the website though. In the end I skipped all of the extra pages of information and literally just bought the meals. I can see they mean well but I was just looking to buy food rather than sign up to any particular plan - I don’t have the energy for all of that. I am sure different people go for different things though. I mentioned Field Doctor to the GP last time I was there and she seemed to think it was a good thing too. Tbh I was surprised she’d even heard of them. 😬

EatingBeans

Yesterday was a day of rest. Much to my relief my head finally stopped feeling like it was going to explode and I even got as far as a shower. 👍 I mean I did still get out and have to immediately lay on my bed for 20mins before I could even brush my hair out, but hey, I got clean! 🎉🤦‍♀️ (I should not feel like celebrating after that but I do!)

Anyway, after all my googling about ME CFS I realised that I really needed to track my heart rate more closely to give me a better chance of pacing myself. A few YouTube videos later I now have an app on my phone called FatigueSense which looks like it will be really helpful to see the bigger picture and if I am overdoing it - that’s if I can ever get it to sync properly with my Fitbit. Then I also found an app on my actual Fitbit called HRPacing which gives a big clear view of heart rate and vibrates the watch if you go over the Anaerobic Threshold (which you are supposed to stay under when managing chronic fatigue). I already totally recommend it for anyone wanting to keep a close eye on their heart rate and found it a complete eye opener! I literally spent the entire day trying to actively rest anytime I got buzzed and was surprised just how often it happened! Driving, walking to the bathroom, standing to do literally anything - all over threshold! The only time I could physically tell it was happening was when I started to get heart palpitations, but by that point my heart rate was way, way too high. So, given the idea is not to 100% rest, but to do what you can but stay under threshold, I think it will be super useful for giving me the instant feedback I need, rather than wait until I have already done too much and crashed again, then having to think back to what might have caused it.

Knowing that my biggest risk for pushing through was my desire to help my dd’s even when I shouldn’t, I had to sit and explain to them that I may have to say ‘not now’ a bit more often in future, whenever they ask for it. That was a really difficult thing to do 😢 but when I explained about how ME-CFS gets worse every time I crash and this is what is needed to get better from it, they got onboard. The app really helped my communication with them because I had something I could physically show them when I ‘looked fine’ from the outside but was actually really struggling on the inside. Rather than say ‘no’ to requests, I tried to say ‘not now’, and consciously tried to do things to keep my heart rate down. e.g. dd2 desperately needed help to find a top she wanted to wear but my heart rate was already at 135bpm (way over my 106bpm limit), so instead of saying yes straight away, I said I’d help in 5 mins and went to lie down first. Then, when actively looking for the missing top, I consciously sat down whenever possible while I looked. End result, I still found the top, but I didn’t wear mysrlf out half as much as usually doing it! 🎉 Later, when dd2 wanted a lift to work and I was fluttering at around 100bpm (just sat in sofa), I said yes to see what impact driving had. She was shocked to see how much it raised my heart rate just driving a few minutes and when we arrived her first suggestion was to go and lay down in the back - finally a bit of understanding as to why I so desperately want to convert the van! Needless to say, since the bed is still only half built I couldn’t lie down, so I opted for deep breathing instead. I know for a fact I would never have stopped and done something like that before, (I just would have pushed through), and even my very supportive dd’s would never have believed me if I had said driving a few minutes was so exhausting. Now though, I have something I can point to that shows my invisible struggle. Complete game changer!

To do this pacing thing properly it has become apparent that I will need to ask work to reduce my hours so I checked my medical records to see if it fell under the 12month rule to be counted as a long term condition/disability. Blow me down, but not only has this been going on since October 2024 (2years ago!), but just a few months after it started the GP notes were already suggesting it might be CFS! I cant believe that I have since had so many tests that all came back normal (that’s what happens with CFS), and despite all the time I have took of work and how ill I have become, it is only now it is being properly considered! 🤦‍♀️🤷‍♀️ Still no actual diagnosis of course and now no specialist to send me to since they have now closed the service, but I at least have something that makes sense. The TN muddies the water of course, but having now properly looked into it, ME-CFS fits so closely I am treating it as that until told otherwise.

They say the first step to CFS recovery is accepting what you can actually do and to stop pushing. I feel like that is where I am finally at - step 1! For two years I’ve been trying to get better by pushing myself (like when you try to get fitter), but that just makes people with CFS worse. Clearly if that approach was going to work it would have succeeded by now. Only taking long periods of time off work so I could go at my own pace made me feel better, so, debt or no debt, bills or no bills, I have decided I need to bite the bullet and reduce how much I work (and sadly get paid less), rather than hope I can just keep going until I get better. When the choice becomes my long term health vs a DMP/not being able to sell the house, my health finally wins. I am sad that I managed to get through the worst crunch point and still might end up on a DMP anyway, but if that is what it takes, that is what I will do.

So, new plan…

• Do whatever it takes to stay active but under threshold.
• Keep writing this diary to keep myself accountable.
• Take the TN medication but keep it as low as possible (CFS can increase sensitivity to meds).
• Stay off work until I can get a doctor’s note to support the Reasonable Adjustment I want to put in for reduced hours.
• Not look at budgeting until I’ve sorted the new hours/pay at work (otherwise the temptation will be to work according to my need to earn more to pay back debt, rather than fitting my financial life around what I need to do for my health.

The last point is super scary and normally the very last thing I would suggest to anyone in a pickle with their finances, but right now, for me, I think it is actually super important. I know if I do the budget first I will not want to risk my new job (and decent wages), by asking to reduce my hours, but I also know in my heart that I need to for the sake of my health. I have to just believe that it will all work out in the end, and take another leap into the unknown. 😱

Heatherweed

Health must come first good luck

daisy_1571

Wow eatingbeans, that app sounds like its really going to help. Its already given you so much extra information about how what appeared to be simple things were actually contributing massively to your up/down, boom/bust.

If you can see the effect long before you feel it, it will make it so much easier to manage and then hopefully the more level lifestyle will actually help you achieve more so dont rule out the possibility of being able to do more hours in the future. With this sort of undeniable, instant help that might be sooner than you think even. 🤞

But omg to the helping look for a top 😱🤣 what is it that makes other folk look with their eyes closed ??? I never ask Mr d to help me look for something, I just look for it 🤣😂 then I find it and stop looking. Him on the other hand 😆 🤣

Dakota_Rose

Knowledge is power so they say, and I think understanding your body, and what it is trying to tell you can only help in your situation. This sounds like a huge step forward.

I have an ex-colleague who suffers with ME and she doesn’t leave home without her bag of essentials: ice packs, heat packs, hand sanitizer, plenty of fluids etc. She also wears a mask in public spaces as she seems to be very susceptible to catching anything contagious.

EatingBeans

Well I saw the GP again today and after less than two minutes recapping my symptoms and a look over my many test results, I finally got given a diagnosis of Chronic Fatigue Syndrome. I got referred to a fatigue/pain specialist and a fit note to take to work to negotiate reduced hours, regular rest breaks and full time working from home for the next three months. That should hopefully give me long enough to see what works and hopefully keep the job. 🤞 No idea what work will think of it and not even sure who to discuss it with because my line manager and head of department are both on leave at the moment. Fine by me as I’m not going to rush back until it has been agreed especially since dd1 leaves for uni on Saturday so I am sure that is enough stress on my body to push me over the edge without adding work to it!

Job for tomorrow is to dig out the relevant policies at work to see what I am facing, and start drafting something for my telephone PIP assessment. Being ill at the time meant I didn’t complete the form so it is even more important to have lots of notes when they call. Still not convinced I will get anything but given the potentially lower wages I have to at least try.

EatingBeans

Terrible night. In too much pain to sleep and need to get up soon to take dd2 to final ortho appointment. I should probably say no but I know how much she wants me there so on this occasion I am going to do it anyway. 🙁 I know I shouldn’t but this is really important to her.

I got a message through from the Head of Department today and even after explaining about the CFS and 3month fit note for a reduction in hours she still seemed supportive so I am hopeful it will work out. I’ve decided to ask to go to 3 days a week. I know in my gut that 4 will still be too much but 3 feels actually doable so that’s what I am going with.

I did a rough calculation of what going to 3 days a week would do to my income, began to feel just a tiny bit panicked, and quickly decided not to do any more sums. Whatever will be, will be. The reality is that no matter how much I want my body to go back full time, I know I am just not capable of that right now. Maybe in the future that might change, but I doubt that will be any time soon.

At least I got a delivery from Morrisons yesterday to stock me up on fruit and veg to fit around the Field Doctor meals. I always feel better when I eat more fruit and at least it doesn’t take a lot of preparation. 😋