Sorry, this is long, I'm treating it like therapy.
I WAS intelligent articulate outgoing and active. I say WAS because whatever is going on with my body seems to have changed all that (hopefully temporarily).
Last year I had massive headaches (I've always suffered with migraine but these were off the scale) I became confused - getting lost at the end of my street, couldn't concentrate and was totally exhausted, sometimes I couldn't remember words. Me being me chose to ignore my body and push through it making it worse as there seemed no logical reason for the tiredness. I'm a mind over matter type
I functioned (in that I managed to get back to work but with no other life) for a few months then KA-POW (trying to make this amusing with sound effects) the fatigue was back.
So I'm off work again - the fatigue is the main issue. I've seen rheumatologist who thinks sjogrens (my GP and I think it's more like lupus) I've got at least 13 symptoms which are rapidly increasing in number. Coming up next month I've got lip biopsy to test saliva glands for dry mouth, endochrinologist for adrenal gland malfunction and 2nd rheumatologist appt. At least it now feels like we are trying to get to the bottom of things.
I've sort of come to terms with the fact that the worst case scenario may be that I don't get back to my current job and something less taxing would be OK (high stress and a lot of driving). I hope I will be able to save energy and get out and about in some way with my partner even if that's not as full on as it used to be.
Don't get me wrong I've not given up by any means! I'm doing well being home and enjoying what I am able to do I'm certainly not bored
The bit I'm struggling with and frustrated by at the moment is the fatigue. Am I being a wimp? Should I push myself more? My instinct is no and no but want a reality check please?!
Some days I get showered and dressed and make dinner. Unloading the dishwasher is a major achievement. Those fripperies of blowdrying and make up and jewellery no longer occur to me. I'm putting on weight, what is happening to my cardiac health with all this inactivity?
I've read the lupus uk exercise advice, I've read the stuff about pacing. I've dusted off the 10 minute Pilates Dvd. I'm counting my steps (3k is a MAJOR success). I've put the swimming, meditation, knit and natter sessions in my diary in case one day I'm up to it. I've tried, really I have, but it's all TOO FLAMING MUCH!!!
I have good days and end up paying with a kind of activity hangover where I feel terrible and I'm stuck in my chair. The more I do (no matter how small) the worse I feel. Is this usual (it's not normal)?
Do I just keep trying in the hope that one day I won't get a hangover? Should I just accept it for now until I see rheumatologist again and until I get diagnosis and treatment?
Do you have any little tips that helped you get more active or are there just some days when it's not even worth trying?
I'm not known for my patience but I'm learning, slowly. Some days though I want to cry because it's frustrating and today is one of those days. Today is the first time I've cried - that in itself may be a good thing.
I'm putting the kettle on, surely that will cure it ... Xxx
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Polly2Cats
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Great post, polly2cats...am sitting here with my 11ses cuppa: transported back to life before my lupus clinic sorted out a treatment plan that really helps (and that includes genuinely damping down the sort of fatigue you've described oh so well)....as a result am now feeling more resilience & stamina at 62 than I have since my 20s. And you're right: this isn't just about meds...lifestyle management & other so-called conservative measures are as important to me as my meds
Am sure you'll get lots of great replies, but for now I'll just say:
Once my hero rheumy was confident about diagnosis (in my case, at the end of my first appt in clinic), I was prescribed daily hydroxychloroquine + amitriptyline....which immediately gave me an energy boost + damped down most joint & muscle pain. Being characteristically reluctant about prescription meds...I waited 2 years before facing up to the fact that my chronic fatigue & neuro cerebral symptoms needed more treatment. A forum friend here urged me to ask rheumatology about trialling a pred taper. From that point onwards things really began to improve...within 18 months daily myco cellcept had been added....and this combined therapy (daily hydroxy + low dose: amitrip + pred + myco) has turned out to be just the right therapeutic treatment plan for me...e.g. In 2014-15 I was able to do decent length mountain walks again...after many years...felt like a miracle 🤗🤗🤗🤗 ...but: I still need my long afternoon naps, plenty of pacing myself + rest + sleep
So, am glad you're here & am wishing all the best as you collaborate with your medics. Yes, the diagnostic & treatment process tends to have ups and down as you all get to know your version of immune dysfunction/connective tissue disorder and how to best manage it. In my experience this forum can make a BIG pos diff throughout 🌟🌟🌟🌟
Thanks (again) Coco. Just knowing this is normal but there is light at the end of the tunnel is a huge boost and reassurance. It sounds like a real cocktail of meds but who cares if it works. The absolute joy of being able to go for a proper walk with my partner would be mind blowing.
(The cuppa didn't help so I decided to walk the 5 mins into town to the wool shop! I was determined not to buy wool just a needle but I couldn't resist a ball of beautiful sock yarn. That helped!!)
I've decided that every day I will go outside and as a minimum do a lap of the park at the end of the garden. Im also hankering after some roller skates! Xxx
I've mentioned the Despite Lupus blog by Sara Gorman before - Sara waxes lyrical about the importance of rest. Preferably BEFORE you get to the crashing stage...
You have only so many resources for the day - once they've gone, they've gone. What you are describing makes me feel tired - I don't have lupus, I couldn't do some of that.
If you have a good day and do things - you are being told the next day that what you did was TOO MUCH. You have to learn your limits - and you have to stick to them. And resting BEFORE you collapse can make a big difference: if you just push through the fatigue in the afternoon you will find the entire late afternoon and evening is wasted because you are so exhausted. then you can't sleep well and it compounds. Rest in the early afternoon - and the rest of the day is returned to you. That is what Sara does - and manages to run a business, look after her children and advocate for Lupus. If she doesn't rest - she can't. She may manage one or two days with a shorter nap - but eventually she crumbles, has a flare and takes weeks to recover.
I hope you enjoyed that cuppa - and that you put your feet up while you were at it
When you have an autoimmune disorder if you don't learn anything else you will learn patience - and the sooner you get the idea and learn to accept that this is your new normal and fighting it is just wasting energy you can use far better somewhere else the easier you will get through each day.
It isn't easy, no-one says it is. But it will be a very precious gift.
Thanks for this. I've had a look at Sara's blog before. I think my issue is getting going in the morning so I'll re read it again. I'm finding going back to stuff with a new perspective gives me a better insight and makes stuff easier to apply to me.
I have learnt not to push until I collapse but it's the tiny boundary shoves that seem to cause the rebounds. I've never been one for doing as I'm told or following rules. My mother is proud that I decided to walk to school alone aged four - that type of independence is hard to change and I'm not sure I want to, but your right and there must be a better way than this.
It's shocking how little I can manage and I thought I'd accepted it but the old me breaks out occasionally!
Hi, I too have read your post with interest and empathy. I am under investigations currently. Fatigue and achiness are my 2 most debilitating symptoms generally out of a long list and the past 3 weeks have been particularly bad and between a level 7 and 9 on my "fatigue scale." I'm not working and the only "must do's" are to get the kids up at 7am, see them out the front door by 08:15, and prepare a healthy meal for the troops at lunchtime. Now I do manage this most days but apart from that and a couple of light chores I'm completely done in and need several hours daytime sleep and or total rest in order to achieve it. Days when the fatigue scale is a 5 or 6 I can get out with my dog for a slow walk between 30 to 40 mins.
I used to be very active and sporty and I do find pacing myself very difficult even with the little I can currently do. I still find myself over doing it and paying for it. My brother was here for 3 days over easter visiting and I am still (3 weeks later) paying for doing too much whilst he was here even though in reality we did very little!! I was consistently a 5 to 6 on my fatigue scale in the weeks before he arrived and as I said since then I'm a 7-9.
I too keep wondering if I should be pushing myself harder but my body definately seems to be saying no.... 😰
"'I'm not working and the only "must do's" are to get the kids up at 7am, see them out the front door by 08:15,..."
When my girls were that age I left them to eat the breakfast I'd put out the night before under the eye of dad and he sent them round the corner to KG first and later the school bus. I had discovered that if I got up and spent that time in the kitchen with the three of them the morning working was bad and the second half of the day was horrendous, I was in a total state by dinner - and at that time I didn't have an autoimmune disorder. Call me the hopeless mother if you like but I learnt how to judge which battles to leave, a skill that is essential in living with any chronic illness and especially a/i illness.
I like your thinking, unfortunately dad gets himself up, showers etc and expects them to be ready when he first sets foot in the kitchen. He drops them at school and then goes onto work himself. If I don't get them up at 7 they arent ready and then are late for school which stresses me out. They do their own breakfast etc. I am working towards them getting themselves up and they are old enough and should be able to do it I guess whilst I'm still doing it for them, they won't do it themselves but at the moment it does minimise my stress!
I'm often back in bed by 08:20 and asleep by 08:25!! And I should add I sleep 8 hours no problem at night.
I've just started reading the document Paul's mentioned about fatigue. I do have IBD and b12 deficiency so this won't be helping. Fatigue is discussed alot on the b12 group.
I've been trying a bit of an experiment over the last few days which seems to be helping me! Might be worth a try for you too?
it's adding a bit of structure to the pacing. I read the blogs again and the stuff PMRPro reintroduced (the spoons) and it got me thinking about "activity tokens" instead of the spoons. I'm trying to work out how many tokens I have per day and space them out over the day. I imagine a bowl of buttons and when they're used up .. That's it!
My new regime is ... Alarm goes off, get straight in the shower and dress/feed the cats and potter about for up to an hour in total (that inc getting showered) then rest for at least an hour with breakfast. I've found if I don't dress etc straight away I struggle to get going again.
I'm setting an alarm on my phone to let me know when times up. That way I don't keep doing more than I should. If the alarm goes off and I'm enjoying my rest I keep resting.
I've found this makes me sleepy in the afternoon so I'm taking a nap. I've decided to go to bed instead of snuggling on the sofa as I think it's more effective.
It's early days but I seem to be getting more done and have more energy. Im hopeful that this way I might be able to increase things a little
I've had a busy weekend (had a two hour optician appt and visitors overnight) but so far so good.
I'm feeling much more positive even if that's only down to taking back a bit of control.
I'm avoiding computer/tablet during relaxation ... It's not relaxing! I've been knitting or listening to audio book or watching an hour long tv programme. I'm also making a bit of a ritual out of my meals - I prep them during activity time and enjoy them as a pre cursor to relaxation time. I'm preparing a few drinks too for during relax so I don't have to move
Best of luck ... This thing is crazy and full of surprises (good and bad) so I hope you get a good surprise soon and a burst of energy
I too have been reading the files and been thinking about my schedule of pacing. The past week I feel like this latest flare has been lifting and I do generally have more energy and feel mentally more capable of tackling some small things. Definitely so the past couple of days... Im going to see how I can encompass some of your tips into my day this week.
Many thanks and good luck!! Let's see how we progress. Xx
Sorry to hear that you are really struggling with fatigue at the moment. It is something that most people with lupus experience at some time, so I'm sure you'll get loads of supportive comments.
Did you see our blog article about managing fatigue from January? If you haven't seen it yet it may be worth having a read as it contains tips and links to a few helpful resources - lupusuk.org.uk/managing-fat...
Thanks Paul (btw I love your helpful responses and links - you make some great connections for people)
I have read the article but as I have goldfish brain I've re-read it and made more light bulbs come on. Although I am cheating at the moment ... In bed using my phone!
I am really hopeful I'll be able to progress to some light exercise if I keep up my good work. I'm tackling every aspect head on which is making me feel so much more positive
About activity levels - I know the frustration too well. I've never been a sporty person but once I got diagnosed with lupus I forced myself to get to the gym, get a personal trainer and work at it. When I started i so weak, I could barely do arm bike, let alone anything else. But I did go twice a week like clockwork and little by little I started to improve.
Exercise is important but you need to be realistic about what you can achieve in this weakened state. Start small, baby steps - 10 minutes a day, say. And take it from there. It's really worth it.
Let's hope you get the diagnosis and the treatment shortly.
So many sympathies to those who struggle with day to day activities. I had every intention of doing out a cupboard yesterday...we are having new gas pipes laid in our road, and the gasman said we might have to pull up a few floorboards where the meter is located, so..being thoroughly ashamed of the cupboard, which was full of hoarded rubbish, I decided to clean it up. At present, I think I would apologise to a burglar at the state of it! So, after cleaning and tidying the kitchen and sitting room, I had no energy whatsoever and it became another sofa/crochet day. But what upsets me most is how difficult it is to keep my music lessons going. I have now cut down to one day a week and I usually take two or three days to recover at all from that. I adore what I do, it feels like a bit of vocal midwifery when a student literally finds their voice and I had one student...a woman in her sixties, who had never sung before, but decided she wanted to take an exam, went in for an Intermediate grade, and achieved a high distinction. I was so proud of her! But I am finding that although Dr Theatre, ( adrenalin fuelled activity) helps, I am getting more and more drained. Students have made it to music college and a few to the West End stage, so it is vitally important to me, and I will carry on for as long as possible. Meds do help a lot, but I think this is one of the crueller aspects of connective tissue disease. Heigh ho...that's my rant for the day...now, let's see if I can manage that cupboard..... Love to all and air hugs. X
I wonder if there is a local choir you could be involved in and just go along and help out on your good days? At least that way you can stay involved in something you clearly love and are good at? And if you aren't having a great day you're not letting anyone down - less pressure. (I don't mean instead of your lessons)
I imagine teaching takes a lot out of you. I find having a normal conversation taxing never mind imparting knowledge.
As for the cupboard ... A shelf/bag of rubbish a day?
Thanks, Polly2cats for your suggestion...I do help out with local choirs with vocal technique, and performance skills, which is lovely. I shall keep on one to one students so long as I am able, and I use a pianist, which means I can sit down when I am in pain or terribly tired. Mostly I try to stay upbeat and I love having a giggle with students. Ranting on the forum definitely helps to diffuse the helplessness and I am so much better of than a lot of those who use the forum. Great invisible friends! The cupboard got done..just as well, as clothes moths have made an appearance, so that was addressed. Take care. Xx
I enjoyed reading these messages, especially since I should be at college today and instead I'm in bed having my first coffee. Feeling really guilty of course!
I was doing so well, so proud of myself, for getting there and nearing the end of my second year without too many hiccups. Suddenly it's all come crashing down. I missed the last class, had to get an extension on an assignment and now still in bed when I should be there.
My bed felt like a bed of nails last night. Tossing and turning, couldn't get comfortable no matter which way I turned. Burning hot one minute, chilled the next, every time I finally thought I was dropping off I needed the loo.
....and the state of my house! I won't even go there!! definitely learn to pace things or things just spiral out of control as I'm finding right now. Good luck everyone and have a lovely day if possible xx
Wow well done you for lasting so long! Hang in there and prioritise only the must dos ... Dust and mess aren't usually that much of a priority. Best of luck with your studies, I hope your tutors know what you are dealing with
You're not being a lazy wimp. It is in fact part of the course, sadly. Never push yourself too hard as I've found to my cost it's best to give into the fatigue when needed as if not you'll only suffer the next day tenfold.
You made me smile re dishwasher as that's like me. These days if I manage to get the dishes done or polish or do a bit of hoovering I class it as a major achievement where's before it was just another chore to do. You're never going to be where you were before, energy wise, but you will find some days are definately better than others.
This Lupus forum has been a godsend for me especially on dark days. They pick you back up and lift your spirits. So you always have a place to vent when at your lowest.
Hi there, yes I am thankfully. They know my issues and I have been awarded some one to one help from student disability. It's been a crazy couple of years really. Fortunately a lot of the work is from home, but I have to do clinic days every week at the moment and I'm there every other weekend. Some of awards I was given just hasn't happened because they haven't been in touch and I've been too busy or too tired to chase them.
Unfortunately I also have auto immune hepatitis as well and having a flare at the minute. They increased my immune suppressant (Prograf) but I started having palpitations and felt like my heart was racing. I've had to come back down on the dose for now until they speak to the consultant on Monday to find out other options. I can barely concentrate or take things in at the minute. All I want to do is lie down. I keep getting confused and forgetful, it's a nightmare. Hoping it all calms down. I've just emailed one of my tutors to tell her what's happening and how I'm feeling. My worries about not getting finished on time. It has to happen at the time when so much work has to be done for June. I'm told next year is a lot easier so that gives me hope. For now I'm just praying for some mental clarity and energy.
Gosh you are suffering. Wonder if they can provide you with one person who coordinates your support so you don't have to chase several folk for your studies? Lots of love - it hard enough studying without so much else happening.
Thanks for your message, yes that would be great. Before I started the course they promised me the world lol. I could have a lie down when tired , they would help as much as possible etc but so far any help I've had to pursue them and even then it's hard work. Even though I've been awarded so many hours help a year from college, it looks like it's just starting to happen now.
A bit ironic as its a college for acupupuncture and tradition Chinese medicine!
I'm just glad at the moment I've survived so far and looking forward to the holidays to have a long rest. Though I want to try and brush up on all the things I'm not sure of.
Hopefully it will all work out! I've come so far I don't want to quit.
I too find fatigue very frustrating. For years I tried to fight it. I dragged my way around doing things, only to find when I recovered that every thing I'd done I'd done badly! You can't win!! I find the way of living with it is to have frequent sleeps through the day. Then at least what you do do, you do well! --
I am so glad to hear I'm not alone (and sadly, I hate to even say that sentence because that means I truly am not alone and, believe me, I wouldn't wish this disease on my worst enemy. Fatigue was something that would hit me like a train wreck and I find that unless someone has experienced this type of fatigue they really do lack empathy. My doctor prescribed me adderall and it does help here and there but I have resigned myself to just accepting that I will never feel "normal" again. I absolutely have a get up, lay down type of routine throughout the day's Usually.
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Help!! Am I losing my mind?
Fatigue and pacing
I think there is a light at the end of the tunnel...
