Chronic fatigue totally sucks!

Spent all day feeling like I’m wading through treacle, I’m totally exhausted.  Keep doing stupid things like pouring the milk for my coffee into the kettle, almost eating the cat’s dinner as it was in a bowl on the counter beside my soup, flushed the toilet before I used it, couldn’t figure out how to open a letter, opened the door to let the cat in when she’d been sat beside me, keep leaving the fridge open, put my febreeze into the freezer (have no idea why…. Good job it wasn’t a full bottle or it’d have exploded!!), keep making drinks and forgetting to drink them, and just making a new one totally forgetting all the old mugs of cold tea everywhere, taking all my medication in preparation to eat and then forget, so I have to wait 4 hours before I can try again, oh and I’ve been wearing my jumper inside out all day and never noticed (a visitor pointed it out to me)…. The list goes on and on.

Feels like it’s too hard to breathe deep enough so I’m dead dizzy, and the orthostatic intolerance & tachycardia is really bad so I’ve been trying to avoid standing up so I’ve spent the day crawling round the flat. No amount of naps seem to be working so I think I just need to sleep for a few days…. But I doubt my sleep disorder will play nicely and actually let me sleep. It stops me getting into REM sleep properly so I end up waking up every 3 or 4 minutes all night. And as I don’t get into REM I rarely get into deep sleep, and the few moments I get into REM ok I end up sleepwalking, sleep talking, have night terrors etc. fun fun fun!

Gah! Hate being this tired. Would love to be able to have as much energy as ‘normal’ people have and not need to nap every 2 hours or so to survive the day! And i get really annoyed when they whinge about being ‘exhausted’ when they’re still able to go out and dance, have fun, do sports etc without any problems at all and brag about how late they stayed up partying and how they were able to get up for work the very next day and manage to do their job ok. It’s not fair! If I tried to do even a little of that kind of stuff when I’m exhausted I end up with my tachycardia getting up into stupid bpm rates, blood pressure dropping into my boots (and so extremely dizzy), my feet turning blue and numb, a gut that refuses to do peristalsis and I eventually black out for several hours. Not forgetting the slurring of my words, the appalling brain fog, the vision disturbances, the migraine and the staggering around like I’m drunk etc before the black-out happens. I think when I get knocked out unconscious I’m actually just asleep, and that my body hit the point of exhaustion when my batteries totally run out and so my body gets ‘turned off’ to stop me dying. but so deeply asleep that no one can wake me no matter how hard they try.

Oh, and when people ask how you are and I say I’m tired and they say ‘oh I know how you feel, I’m completely exhausted!’ but are still able to bounce around and function without any problems, and go shopping to a large high street and walk around for hours and hours without needing a break. Yeah right…. Methinks they mean they’re tired, not actually exhausted. Methinks it’s the same as people saying that they’re ‘starving’ when they’re just hungry.  I just hope they never end up with CFS or a similar condition that makes them able to feel what real exhaustion is actually like, I wouldn’t wish it on anyone as it totally sucks.

Surely I have enough conditions to not need chronic fatigue too.?! It’s not fair, why cant I have just a few normal energy days so I can actually get stuff done! Needing to sleep every 2hours is really rather irritating.

Ok, rant over….and I admit that it’s a little unfair to compare my fatigue to anyone elses as it’s all relative etc, I just wish they’d remember that I have CFS so please don’t say that I can’t possibly be as exhausted as them... cos I’m usually more tired but don’t moan about it as it’s pointless as I have it every day…(sorry for moaning!)

On a more positive note, my doctor’s appointment yesterday went great and I’m finally being tested for gluten intolerance. Woo! And so hoping my new chair will allow me to save a few spoons so I’m not running at a deficit every day. Anyone curious about the spoon reference check out this link:Spoon Theory from butyoudontlooksick.com

Going to bed now and gonna get loads of sleep… hopefully…..

I’m about to become a new wheelie! woo!

I’m about to become a new wheelie! yipeeee! should get my chair in about 6-8 weeks and struck gold as my borough don’t do the voucher scheme and so are paying for my chair to me made custom built just for me! And nothing for me to pay! Not a penny! I can’t believe my luck and not entirely sure how I qualified and got through their rigorous qualification criteria (they're super strict cos they don’t do the voucher scheme) as I can still technically walk with crutches.... (Although not very well, and only for very short periods of time, and every step is really painful) but I’m not complaining one bit! :^D I was fully expecting to have to fight for my chair, I got so worked up and stressed over it and it was all for nothing as the assessment went fantastically! The question of qualification never came up at all so obviously the first assessment and all the backup info from my physios, doctors etc was sufficient. Yay!  I hoped I’d sleep well on the night of the assessment but I was waaaay too excited about my chair to sleep (and still am…. I’m like a kid waiting for Father Christmas to arrive!).

 

I’m getting a customised rigid Ti Lite although not sure which model, don’t care though as all their rigid chairs look fantastic and are around the same weights. All have these flashy, fancy pants spinergy wheels that are sooo easy to push! Tried a few chairs and was shocked how easy it was to push the TiLite compared to the others, and they were all of similar weights… had a proper try of the chairs and got to try them on the lino floor of the assessment room, on the carpeted hallway and outside over the pavements, cobbles, down dropped kerbs etc and put my choice of chair into and out of my car to make sure I could manage it. Fab assessment! Proper fun!  And I got a free cup of coffee in the assessment! Woohoo!

 

But, best of all- when I was sat in the TiLite chair I almost had no pain from my SI and pelvis! That’s dead unusual for me, I usually always hurt there in varying intensities and on the day of the assessment my SPD was awful so it took me a while to figure out what was different when I sat in the chair. Think the assessors though I was a bit odd as I sat there all confused for a while, then got really, really excited when I figured out what the difference was! Soooooo can’t wait to get my chair and be able to go places that I currently can’t get to (like the zoo, aquarium, museums, shops without needing to queue sat on the floor, national parks, ‘walks’ with friends…. I’ll be able to go feed the ducks again without needing to sit practically in the Thames…. Oh I’m so excited!!!!!!!). I soooooo can’t wait to get my chair and reclaim some of my lost freedom!!!! wooooohooo!

It’s amazing how quickly news like this can change my mood- I’ve gone from being really rather depressed to being ecstatically happy! Not had a night as bad as that since so I’m thinking it was a once off. Maybe my brain was just reminding me that the depression is still lingering at the back of my mind so I need to keep my coping skills fresh and practiced! ;^D

Last night my old ‘friends’ came to visit- depression, self-harm & suicidal tenancies. Great. Thought they’d gone for good.....

Seems all it takes is for my fibro pain to get above my pain tolerance level then they all come back with a vengeance.  Went through a really bad patch from ages 13 to 20 ish when i was always depressed and self harmed daily and often decided to end it all but never could as I couldn’t do that to my brother as I know he’d have been really upset.

In my second year ish of uni I just forgot to self harm and my mood greatly improved. I don’t think it’s a coincidence that I was then in halls of residence and so able to nap between lectures so I wasn’t quite so exhausted all the time. my fibro pains get much, much worse when I’m exhausted so they reduced loads and I was able to live a more ‘normal’ life. Since uni I’ve had the odd setback of the depression and self harm but nothing like last night! It was so strong that I had to lay on my hands to stop me hurting myself, and the longer I resisted the stronger the need became to end it all. I just couldn’t bear to live if I was gonna hurt this much all the time, it was in absolute agony last night but I didn’t dare try and take some extra pain meds in case I took a few too many…. I think I must have cried for 3 or 4 hours before I finally fell asleep at around 5am. I soooo don’t want another night like that! I felt scared that I would try and do something stupid, but at the same time that was the only thing I wanted to do.

Really needed to talk to someone at around 3am but all my friends would have been sleeping, and the online message boards were dead- there was next to no new posts and so I assumed my friends in other countries were busy. Now that I’m awake and feeling much better, I know that I have many friends that may have been annoyed that I’d called them but would have comforted me and forgiven me for waking them up. But last night my brain was telling me that they would be furious and decide to cut ties with me (like certain other friends did when they discovered I had an incurable condition, just when I needed them). I need my friends, and can’t bear to think of a life without all of them so I didn’t call anyone and just cried instead.

What do you do if you really need a hug but it’s the middle of the night and most of your friends live in different parts of the country? Even the cat was asleep so I couldn’t cuddle her, and she’s supposed to be nocturnal. Settled for hugging myself, curled up into a ball, and thankfully I fell asleep.

Now it’s daytime and I’m awake I still feel low and a bit tearful but don’t have any need to hurt myself (or worse), I love being alive and I’m now terrified that I may have ended it all last night. I’m just glad the logical part of my brain was still functioning last night and it stopped me. This morning I had a call from my dietician who was really worried about my vit D deficiency as I’m severely deficient, deficient enough to be experiencing adverse affects which apparently include depression. It such a coincidence that she mentioned that the very morning after my awful night…. A normal level of vitamin D is above 50 nmol/L. Levels less than 25 nmol/L mean that you are deficient. My vit D level is only 7 nmol/L. it’s likely that I’m not absorbing it thorough my gut properly (due my various gastrointestinal problems) as I’m still very deficient even though I’m taking the medical dose of d3 forte tablets. My dietician wants me to take a much bigger dose and she’s contacting my GP about it.

Let’s hope my recent depression and lowness is due to my vid D deficiency and when that’s corrected it’ll be back to what I was like a few years ago- nice and cheerful without having to fake it when in public!  Have no suicidal tendencies today so fingers crossed that if I take extra pain meds in the evening I’ll keep the fibro-from-hell at bay and not have another night like last night, cos it was hellish. I really quite worried that it’ll happen again and quite scared of the prospect. But I’m a big girl and so I’m sure I’ll cope again.

Census etc.... :^D

Sorry for delay in updating- was in wales with my lovely pals that have just had a new baby! She’s soooo cute, and I did off roading with a mobility scooter (sooo fun!) but will write about this later as I need to download my photos from my phone.

Census……decided to fill it in online due to how far away my post box is….bad plan- been stuck on question 1 for nearly 20 mins as the site is unbelievably slow. Surely if you know there will be a high number of people using the site you’d actually develop one that can handle it!  Oh, and it’s just timed out and logged me out! The code is 20 digits long so not a quick and easy code to enter if you transpose numbers…. Stupid bloomin census…..  I’ve got shed loads of massive  forms to fill out at the moment and I soooo don’t need another. Especially one that’s 30 pages long! I feel lucky that I live alone so don’t have to fill out some of the questions! finally did it though... go me!! hope everyone else manages theirs ok! xx

  

Had some really good news on Friday- my hip operation can be postponed! Woohoo!  my CT scan showed that I have marked shallowness of both hip sockets so I definitely have hip dysplasia (& we already know I have some damaged cartilage in my left hip), but the bones are all looking nice & healthy with no signs of deterioration. so I agreed to wait till my hips start to struggle as the op would damage soft tissues that may not heal thanks to my EDS so I may end up with more pain than I do now. so I’m just gonna carry on as usual as I can tolerate the pain perfectly fine- most of my other pain (eg the sciatica and bicipial tendonitis) is far worse so this is nothing in comparison! I was mainly worried that the pain was coming from damage to the bony structures of my hip thanks to the 29+years walking on dysplastic hips (that slide around in the sockets) and my assault in late 2009, so I feel soooooo reassured!  Was mildly annoyed at having to wait 3 hours for the appointment but there’s no point getting upset and angry about it as it’s just what happens in hospitals- every appointment over-runs a little and by the end of the afternoon the additional time adds up.  Many people were giving the receptionists and consultants grief about it but there was really nothing that they could have done about it. at least those around me saw the funny side to the situation (as did i) and we all got really excited when the consultant’s doors opened! I’m sure the consultants were relieved that they got some happy patients for once!

    

And my ‘bodyguard’ worked her magic on the journey there- we got to the hospital in only 1 hour! Usually takes between 2 &3 hours but as we got to our connecting stations the train arrived so we had no waiting! And I had absolutely no problems getting a seat, & it was obvious that people could see me etc so I’m much less scared about the tube now. Hopefully that really bad journey was just an unlucky carriage… fingers crossed! Got another big appointment on Tuesday with the autonomic nervous system team at The National Hospital for Neurology & and Neurosurgery located at Queens square (WC1N), let’s hope  my journey is as easy!

Had a great assessment with the independent living team about either getting a carer from social services or the personal budget so I can hire a PA. I’d probably go for the latter as it’s much more flexible so If I need to re-arrange my care for a different day (eg if I’m in London for an appointment) I can do. And they don’t do meal prep and I really need this so I can hire someone to do it for me, in addition to other tasks. Got a mighty huge form to fill out and have to get the go ahead from my co-oordinator lady but it’s all looking really hopeful!

                                                                      

Another potential positive change may be happening – had a tip off that there’s charity shops in whitton always looking for more volunteers! Looked at volunteering in loads of different charity shops in west London but every one I went it was fully staffed and not looking for any new people and voluntary office work wants you to work set hours (all more than I can do) so I got really disheartened. So I’m really excited that I may have a part time voluntary job by the end of next week! Wish me luck!

So I’ve had a busy few days and I’m properly knackered now, which has set off my random heart-rate & blood pressure thing so I keep blacking out when I stand, and my chronic fatigue, fibro, sciatica and dermatitis are all flared up but I’m sure I’ll feel much better after a few days of rest