Coming to Grips with New Normal

[Silvergilt]

This is just a long ramble, sorry; I'm just struggling a bit trying to process.

I have been fighting extreme fatigue for months - actually for the past year and a half. Most of the time I just dealt with it, as a lot of chronic illness is just coping with whatever your body is throwing at you as modern medicine doesn’t seem to be able to figure it out or treat it. So most of the time I ignore the fact I’m too tired to do anything but sit on my couch and type. My garden, which I love dearly, is a overgrown, weed-filled mess because I’m too exhausted to work in it. I don’t drive for long, or take trips because I’m so spaced out it’s dangerous to be behind the wheel. I’ve cancelled my Life in the UK test because driving to the test centre was too far and I’d probably cause an accident, and even though my first uni module starts in October, I'm already stressed out because I can't focus on text for longer than five minutes at a time.

I went to my GP with a growing list of symptoms, some of which were really alarming. As per usual with this particular GP, I didn’t get an assessment: I got a lecture about my weight. He very seriously and solemnly told me I needed to see a ‘health coach’, put the responsibility of my health firmly into my own lap and told me everything would be fine if I just wasn’t fat anymore. I left the appointment, sobbed for five minutes in my car, and drove home. I then called my rheumy, telling him I couldn’t attend my appointment because I was too exhausted to drive (which was true, a half hour drive is too much for me). Rather than be dismissive, he immediately checked my bloods: I’m anaemic - I’m always anaemic, a state my GP assumes is because I’m just ‘naturally low on iron’ (?!). As it turns out, a good portion of the symptoms I've had can be attributed to anaemia and not to being a fat woman. I received iron infusions, and they helped considerably. The first one was amazing! The second one, which was a half dose, wasn’t quite as good; as a matter of fact I had to pull over driving home and sleep because I couldn’t quite make it home and I was afraid I’d crash.

When I went to see my rheumy yesterday, his nurse to take my vitals (who I’ve seen twice when getting infusions) was all smiles right to the point she closed the door, and she turned to stare at me. I’ve never seen that much concern in a person’s face before, and it caught me off guard.

“Oh luv, you’re really not well, are you?”

I don’t wear makeup to see medical pros; I’ve learned by now if I do that, they assume I’m better. They need to be able to see my skin tone, see the dark circles and be able to tell how I am by how I appear without makeup on. And apparently, I look like hell! She fussed over me for a good ten minutes - clearly I’ve deteriorated. Amazingly even to myself, I tried to discourage this. I’m so used to people’s horrified, fumbling attempts at trying to care (and usually failing badly) I tried to put on the stiff-upper-lip routine and claim it wasn’t as bad as all that. These are health pros; they didn’t need me to give them a ‘I’m all right, Jack,’ routine, but old habits I suppose.

But she was furious. She wanted to know why they only gave me a half dose of infusion last time, wanted to know why I wasn't getting help or support, she was literally ranting for five minutes at the state of me.

I mentioned I’d pulled over and slept after my last infusion trip, and that I had arranged to see my rheumy at clinic now because I could no longer make the drive to the Dist. Hospital. I don't even drive to my son's school functions, and I've nearly caused an accident when I've had to pick him up at school more than once. To me, this stuff is my normal. This is so commonplace for me I don't even think about it.

Bless the nurse: she blanched, literally went pale, and said ‘just wait here, I’m going to speak to your doctor.’ And whatever she told him, she was convincing! I was whisked into his office, and he started asking me questions. Without preamble, he put in two referrals; one for a sleep study (he suspects obstructive apnoea), another for Crohn's investigations, and has me on the books to have another infusion in a few months if my iron levels dip off again (which he seems to suspect it will do).

Now I have suspected apnoea for a while now; I can’t sleep on my back at all. I end up waking up at night a lot, and I never feel like I've had any sleep. Sleeping on my stomach results in me choking (which is scary and weird at the same time). But I just thought it would be solved by sleeping on my side. I had no idea obstructive apnoea is actually rather serious. But I can’t deny my fatigue levels are literally affecting everything I do right now; I don’t have the energy for anything, and in my own head (and in the head of my GP and others) I attributed this to being a lazy fat person.

But my rheumy is amazing. He mentioned apnoea does happen to overweight people, but that trying to lose weight when you’re so tired you fall asleep reading (and I do this often) is an absolutely impossible expectation. Not once did he blame my anaemia on ‘poor diet’ without asking what I even eat. Not once did he blame my apnoea on being a fat chick.

I didn't realise anaemia was so serious. I didn't think apnoea was serious either. I've been wrong. These are all conditions I could have been investigated for, and treated for, if only a medical professional took me seriously in the first place. I shouldn’t have suffered with anaemia for years, if it turns out an infusion would sort it. I shouldn’t have been dismissed as my health grew progressively worse before anyone tested my blood CP levels or bothered to do a bone scan. I shouldn’t receive a lecture on my weight every time I raise a new symptom, when the symptoms combined with other issues could be something quite serious. I’m on too much medication to be faking it. It shouldn’t be this way, and the only reason I’m getting good care now shouldn’t be because my rheumatologist spends so much time working in America that he’s become aware that BMI =/= ‘healthy’, and he's used to seeing people who average 6' or taller, works with bodybuilders, and is aware I really AM 'big boned' (seriously, he's fascinated by my bone mass, he says it classes me in the upper registers of the strong-men he works with in the US. I am rather smug about that, tbh)

Modern medicine has a lot to answer for. It’s great when it works - it’s saving my life, and has done several times. But when it doesn’t, it makes people suffer. Knee-jerk assumptions due to race, class, or weight are hurting people, denying treatment is hurting people. I shudder to think how many people go through the exact same thing I do, and don’t have the support, funding, or care-team I do to get to the bottom of things. And it took me over 10 years to get this team. I am incredibly lucky to have the rheumy I have, and even more lucky that he is clearly on a Mission to get me as sorted out as I can be.

But it shouldn't be luck.

Now I'm getting advice from some fellow chronic illness folks on things I might be able to get round the house that will help me with tasks I used to struggle with before: sock aids because I've realised I've stopped wearing socks because trying to get them on is excrutiating, my kitchen and bathroom are being redone by the council and I've been approved for a shower as the bath is too hard for me to get in and out of, I don't even try doing yoga routines that require me to get down on the floor, and I do seated ones in the chair instead. I've made my peace with not being able to eat fibrous foods as much as I used to, and I drink more juice now rather than try and eat fruit (I used to be ashamed of juice because ZOMGSUGAROBESITY). I'm going to need more stuff for my bed I think; wedges, a topper, maybe even a rail to help me get out of bed as I struggle now. It's doing my head in a bit; I didn't really think I needed this stuff. I thought 'well, everyone struggles, so just get on with it'. And I've not been doing myself any favours. I'm really trying to change that. I don't need to stiff-upper-lip, and I don't need to be self-depriciating.

Now if I can just keep my bedroom from looking like a hospital, I'll be happy.

/braindump

[Hidden]

Wow...so so sorry to hear about all your problems and what you ve been put through. You should send a copy of what you've written to your GP practice manager and get a new GP. Plus it sounds as if that hospital nurse and your rheumy could do with being officially praised so send a copy to PALS too as they don't only deal with complaints but welcome compliments too......which they rarely get I might add. So hope things improve for you soon. In a final note....please continue to be sensible about driving and don't risk your life or anyone else's for any reason. See your GP/rheumy about arranging hospital transport. Xx

[Silvergilt in reply to Hidden]

Thanks for commentary, I was thinking about praising my rheumy and my nurse, and I'll do just that. Thanks for the reminder! As far as the rest...unfortunately I'm in a rural area, and this is the only practice around. The GP and his wife are the only two Drs in the practice. I just don't ask them for anything anymore, as I know I won't get it. I go in for bloods, my annual jabs during flu season, and that's that. if I have an emergency I call out of hours GP and they send someone straight out.

As far as transport goes, I've tried that but they really tend to get rather stroppy about anyone who isn't completely paralysed or in a coma asking for that as I've tried in the past (assumption you can just 'take a cab' or 'get a friend' - but if either of those were options I wouldn't be asking!) The solution we've come up with so far of meeting at a much closer (and tiny) memorial hospital where my rheumy holds clinics is pretty good. However in light of needing a sleep study (and the danger of me driving to other hospital if I need to do that) I'll ask rheumy how they're going to get me there when the referral is finalised. Maybe he can pull some strings.

[Hidden]

You could publish this. Oh my goodness what a difference a good listening ear and someone who takes you seriously is! I don't think it is modern medicine so much as the human aspect - humans with their prejudices and presumptions about class, race, gender, eight, lifestyle etc.

I know what anaemia is like - it is debilitating. This time last year I was going back to work after the summer holidays unable to understand why I felt so exhausted, weak, down, unrested. No amount of sleep improved things and I used to think I could walk it off and end up horribly out of breath and with a racing heart. The anaemia has been treated and I feel I like a different person.

I hope you get the help you need both with the tests and getting to the tests and that eventually you start to feel better. I too was beginning to think that this was my new norm. Thankfully with the right treatment I feel a whole lot better and it takes a lot more to tire me out. There is a lot to be said for healthy normality!

[Silvergilt in reply to Hidden]

Oh yes, the racing heart thing! I scared my son in the garden as I was trying to move a heavy plant pot, and I was gasping and felt as if I was going to faint as my heart was pounding in my ears. "I've never heard you breathe like that before." Blood pressure was up (and I have always had lower BP), heart rate racing, pale and languid. GP told me the great results he had with his health coach in losing weight and told me 'you're carrying the equivalent of another person around, it's no wonder you're tired.'

Thank you, Dr. Never asking you anything again.

[CRYSTAL11]

Well done you. It takes courage to keep going when there isn't any one around to help

I am glad you have found a good rhumy and that nurse was just brilliant. I do know the sleep apnoea is difficult to live with. Do you have to have a c pap machine to use at night it has helped me so much

I have had Lupus now for about 30 years and have seen many bad doctors and not many good ones

It's a pity that common sense and compassion isn't taught when they go thro training

Good luck with finding the help you need. The only suggestion would be to talk to the C A B maybe they can point you in the right direction for some help