Absolutely fed up

Not sure where to start with this, but I have to get it off my chest.

Bit of background, I am type 1, diagnosed age 12, now age 36, so 24 years of diabetes so far. I had ok control during my teens, but I know things could have been better. Not 100% sure what triggered it but one day I just stopped testing my blood and attending appointments, so had absolutely no idea what was going on, absolutely winging it, but I felt ok, wasn’t having many hypos and wasn’t getting the awful acetone taste in my mouth, wasn’t getting horrendous thirsts so carried on. I was injecting for what I was eating, splitting doses for pizza etc but no corrections as I had no idea what my bloods were. I was also on one a day Levemir as I was never informed otherwise. This went on for far too many years, by too many years I am talking double figures.

This year I have had a few massive wake up calls and am pretty convinced all my chickens have come home to roost, my utter stupidity has finally caught up with me. First was my eye going wonky, it did turn out I don’t have retinopathy and I don’t have any diabetic damage (goodness knows how!), but the fear of it possibly being so made me take a long hard look at myself. I saw my GP in July, begged for a referral back to the RIE clinic, had my HBA1C checked (69 - she wasn’t too concerned by that, but I was!) I got a new meter, got test strips and decided to start taking care of myself, this resulted in me going from one extreme to the other, with me peaking at 30 tests in one day as I was so scared of going high or low. I realised this nonsense couldn’t continue and discovered that my local Asda sell Libres so decided to self-fund, however I am still just as obsessed, but it’s thankfully not as painful. It has been a real eye-opener though, Novorapid is taking forever to kick in (upwards of 45 minutes) and I discovered I get foot on the floor spectacularly - more to flipping deal with! I might also be allergic to the filament, which might be causing me to feel so grim, would be just my luck!

Anyway, the past couple of weeks it has just been one thing after another and I am just feeling completely overwhelmed and wiped out. I had what I thought was the stomach bug that was doing the rounds at my work, but two and a half weeks later I am still feeling awful (maybe slightly better than this time last week), despite seeing my GP twice and being sent to MAU at St Johns for bloods and monitoring for a few hours, all that was found was slightly raised white blood cells, but nothing I needed admitted for, so was sent home. My GP agrees I am fighting something, we just don’t know what. I have zero energy, zero interest in anything, no appetite and am having to force myself to eat (just glad I live with my Mum otherwise I doubt I would be eating at all), I have been fighting my blood sugars and apart from the odd wild high (no higher than 12 and it didn’t stay there for long) I have managed to keep my diabetes under control.

I haven’t been at work for about 2 weeks now and I am really missing it, but I am not in any fit state to go in, I tried last week and it ended with me being popped in a taxi and sent home. I am spending nearly all my time in bed, even having a shower is completely exhausting me and tonight I completely broke, watching SYTTD and I saw the Statue of Liberty and burst into floods of tears, actual uncontrollable sobs. I love NYC and was planning to go again this year, but I really don’t see that happening.

I am calling my GP first thing tomorrow as I am pretty certain I am depressed again on top of whatever it is I am fighting. I just want to get to the bottom of it and be my old self again, I miss her.

If you made it to the end of this please give yourself a pat on the back, you deserve it.

Norfolkmell said:

You are doing the right thing by seeing your GP. Keep seeing him until you get answers. Write your questions down so that you can stay focused. Make sure you understand what he's saying, keep asking until you do.
Didn't understand your foot on the floor?
You've had to deal with a lot, depression is a chemical imbalance and there is plenty of things your GP and you to get the better of it. It will take time but these forums will help you, there's always someone around to talk to, usually with experience. I don't know much about T1 or insulin but there will be someone who does.
Let us know how you get on I'll be thinking of you.

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Thank you, I’m going to keep seeing him until I get this sorted out as it can’t go on, I feel my life is on hold right now.

Foot on the floor is my blood glucose staying pretty stable overnight until I step foot out of bed and then it rockets upwards. One morning I was 5.6 when I woke, then I got up, showered, dressed, ready for work, wandered up the hill to get the bus and was at 11.3 in the space of just over half an hour! I’m not a morning person by any stretch of the imagination (despite waking at 5am pretty much every morning recently) so am having to think carefully about how to deal with it.

Diakat said:

Oh and ask diabetes team if Fiasp might be better than Novorapid.

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That is on my list as the Novorapid is getting ridiculous, I dread to think of the spikes I have had in the past! It might not make a blind bit of difference but at this point I am willing to give anything a go. I also have it all logged on the Libre so the injection times are all there along with my graphs.

@Diakat A pump is also on my question list (can you tell I have been doing a LOT of reading on this forum?), I always thought I would be a bit funny about being attached to something 24/7, especially given how accident prone I am, but the benefits seem to definitely be worth it. Apparently my CCG only prescribe the Medtronic so have done a bit of reading about that too.

I should be able to get the Libre on prescription, just have to agree to do a DAFNE and an education session first from what I have read. Lothian seem to be trying to get everyone on to them, which is good. I am just hoping and crossing everything that I am not allergic to the filament in it or I’m pretty much back to square one. It’ll just be my luck that I am and that’s whats caused me to feel so awful for the past few weeks.

Just back from seeing the GP, luckily my appointment was with the female doctor that I really like. She really listened and I didn’t feel rushed, she has signed me off work for another week, has taken more bloods to try to get to the bottom of what is going on, however she did say that there’s a tummy bug going round that can linger, so maybe it’s just that. She does seem to think it’s definitely viral too.

I asked if it could be because I have taken control of my diabetes, she asked when I started getting back on track (end of July) and she thinks if it was that it would have happened a few weeks in, not months, which was also what I thought, but was good to have it confirmed.

We can’t rule out an allergy to the Libre, but she didn’t know a lot about them so advised me to contact my diabetic team, so I had to explain that I currently don’t have anyone but I am due to attend the clinic on the 17th of this month, she agreed that if it is the Libre I can’t feel like this until then, so I gave the nurses a call this morning and left my details on the machine for a call back, so fingers crossed. We did both agree that it would be a bit of an expensive experiment to take it out 4 days into the sensor if it’s not the cause.

I am still absolutely exhausted, but feeling a bit brighter today, have managed a pot of yoghurt, a biscuit and some grapes so far and even though I had a horrendous night’s sleep I am going to try to stay out my bed as long as possible.

Thank you all for the hugs and the messages last night, really appreciated.

Just spoke to a lovely diabetic nurse from RIE, she hasn't personally heard of anyone being allergic to the Libre other than skin issues, but she has advised me to remove it.

Poor girl got the whole overwhelmed whine from me too and she has advised me to call my GP back as I spotted another symptom once I got back this morning, I have a slightly swollen, slightly numb/tingly patch on my left hip/thigh and when I bend over to the right it feels like my skin is going to burst open, it doesn’t have any redness or heat and doesn’t look particularly odd, but she said it might be the source of my infection, so I am again waiting for the duty doctor to call me back as the GP I saw this morning has finished for the day.

@Norfolkmell Funny you should mention fibro, one of my best friends has it and has suspected I might have it for a while as if I have a really full-on day, or go to a gig or such it can knock me on my backside for days. I’ll have a look at Co-enzyme Q10 on Amazon, thanks. Although I haven’t been quite so exhausted today and have definitely had more interest in the tv, and I haven’t been napping so hopefully I might get a decent sleep tonight.

That hypnotherapy sounds amazing! What a wonderful thing to be offered and that’s excellent you can record it next time so you can use it whenever you want.

**UPDATE**

Back at the GP today for the results of the blood tests she took on Wednesday and still nothing showing up. She did have a look at my thigh though and thinks it is possibly a trapped nerve, but I have to keep an eye on it as the symptoms might also be shingles, so have to watch out for any rashes appearing. She also checked my foot and had bother finding a pulse in my right one (funnily enough the other GP, diabetic nurse and the consultant I have seen over the past couple of weeks have had no problem and I had no problem when I got home either), but I am booked in for a Doppler test on Tuesday, just to be sure.

Now for an update on the Libre situation - I got really annoyed at feeling ill yesterday and ripped it out yesterday afternoon. Managed a full meal last night and have pretty much eaten normally so far today and I don’t feel anywhere near as exhausted and I actually made it out the house for a decent amount of time this morning. It might be too early to call it, but I have a feeling my body was fighting against it.