It seems I have had to cancel appointments more than usual. I can hear it in the person's voice like "not again". It leaves me feeling like a failure. I have good intentions but I never know how I am going to feel until the day of my appointment. Was wondering how any of you deal with this. I think it's why I try not to plan too many outings with friends. I would welcome hearing how others deal with this. Thanks
How do you handle it when you have to cancel appo... - LUPUS UK
Hi i have a good neighbourhood hairdresser who understands my health problems & in fact her husband has autoimmune issues. She squeezes me in at the last minute knowing i am juggling & not always able to plan ahead. Other then that & medical, my life is appointment free (doc/,nurses are enough). It is a relief to have that compassion & support... 😊 ml
Hello Maggie Lee
Sorry to have taken so long to thank you for your helpful reply. I have had a bit of a lupus flare and the depression really got to me. So nice that you have an understanding hair dresser. I am not sure mine is. She says she understands but I am not so sure. I feel really bad when I have to cancel but I cannot make myself feel healthy on a bad day. Yes, compassion is very important and a blessing....I may have to move on.
I totally understand where you are coming from. I have been in this situation for a while now.
I have started to become intolerant to hair dye. The smell and the bright lights in the salon left me reeling and with a rotten headache - joy! At one time I was able to sit in the hairdressers having hair colour painstakingly woven back in to naturalise it ( never did quite look that natural).Chuckle. Over the past couple of years my hairdresser has noticed thinning hair and the fact I have left the colouring for ‘just a little longer’ each time I make an appointment - of which they have become less frequent - I have told him why and explained my situation, so at least he understands now and is very helpful . I am going old and grey disgracefully! Many of my appointments for other social outings have been cancelled due to not knowing how the day will pan out. It creates social isolation but, I catch up on the good days . I have stopped worrying wether or not it upsets the people concerned. They don’t always understand how you can be affected or feeling - usually because many of us don’t appear to look unwell. I explain and hope they do, but if they don’t I realise that it’s not really my problem - it’s theirs. I have a couple of really good friends who are totally understanding and I reserve my better days to share with them.
Hope this helps a little? 💐
So sorry for not replying sooner...had a bad flare and got so depressed. I had the lupus molar rash and it was the worst I have ever had it. Usually make up covers it but this time nothing did. The rheumatologist put me on shot term prednisone regimen and a dream for my rash and it is barely noticeable now...which lifted my mood.☺I loved your reply and found it quite helpful. I agree that it people cannot understand...it's their problem. I too have a couple close friends who understands and it's so easy being with them. I have to cancel plans too and yes it does cause social isolation but I am learning to accept it. Thank you for making me feel okay with not worrying about what others think.🌼
Sorry to hear about your recent flare.😏 So very understandable you have been feeling low. I do hope you are feeling a little better now? 💐
I really believe we try so hard not to disappoint others, or appear miserable and unsociable, that we don’t appreciate the impact it can sometimes have on our wellbeing. For me, that in itself can be damned hard work. As for accepting - not always easy but, I have come to the conclusion that to continue to try and ‘people please’ would only drag me down further. And feeling ok about it is exactly that- it’s ok!👌🏼🤗
I have recently began to make my health top priority and realised how people pleasing is not at all good for my spirit. You wouldn't believe how others actually left my life because I refused to be a door mat. It was like a slap in the face...like how dare I actually take care of myself. Sometimes it hurts really bad but I have made room for new people who genuinely care. I don't want to talk about my health issues all the time but I don't want to feel I have to hide and never be genuine. Just a few kind words can go a long way. I try to make sure and listen when someone shares their issues...sometimes that's all we need. Thank you so much for listening....and I do enjoy your attitude! blessings🌻
I can totally empathise. I have told my optician and Dentist about the unpredictability of my illness . They are understanding . I used to hide my illness from friends and make excuses if I couldn’t make it . As I’ve got worse, I have had to explain to friends how fibro affects me. I’ve got to say my friends are amazing . When I am up to seeing them I take a couple of minutes to update them then move the conversation onto more interesting things . I find fibro is a bit like childbirth . On the better days you can almost forget what you are going through and be your ( almost ) old self. Today is a bad day for me but I am going to try and remember a day last week when I felt reasonably good. I do hope that you embrace the good days and tell your friends and family about your fibro. You’ll be surprised how understanding most of them are and if they’re not then they’re not worth having as friends. Xx
Loved your reply. I must apologize for not replying sooner...I had a lupus flare and it was not pretty. I must say the depression really got to me. I am feeling better but I feel like I am learning who I am with lupus and grieving for who I once was. It is overwhelming at times. I am going to take your advice and not hide it from people when I am having a bad day. I have two people who understand and accept me as I am and I am so grateful for them. Thank you so much for an uplifting reply and I do hope you are having a good day.🌼
Hi Barbara. I’m so happy to hear that you are feeling a bit better. You sound as if you’re going through very similar to myself. We’re not suffering from depression but the illness pulls our mood down so that we’re not our usual happy selves. I have just had an appointment with a really good consultant who went over all my symptoms thoroughly. She had given me anti nausea tablets ( I suffer this when I’m I’m in a flare which is quite often). She has also started me on a very low dose of sertraline. She says it will lift my mood and maybe help the pain. Fingers crossed 🤞. I hope that you are having a good day. I’m starting in my third good day so intend to enjoy it but really try to not overdo things . Good luck and feel free message me any time that you need a chat with someone who kind of understands what you’re going through. Glad the rash has cleared up. Xx
Thank you for your kind words. You really lifted my spirit. Yes the depression from lupus is quite stifling. I am on Nortriptyline and it does help and was told it also helps with pain. My molar rash was so bad and that brought me down. My thru my prescribed metronidazole cream and prednisone and it is gone! 😁😁
I wish I knew which one worked the most. Does the sun cause the butterfly rash? Because it is extremely sunny and hot here in Kansas and I have a screened in back porch so I didn't take any precautions. I have since bought a wide brimmed hat and slather on sunscreen while sitting on the porch.
I hope the sertraline helps you. I know what you mean when you say you are on your third good day!!!! I get so excited when that happens....so good for you and I hope you thoroughly enjoy your good days! Thank you for the invite to message you anytime....I will keep that in mind. Your kindness is so much appreciated.🌹
I found until I was settled on some meds that I felt confident with I just didn't stress myself making plans......... the relief that brings is unbelievable.
i'd phone my hairdresser (who knew what I was battling) when I felt I could get in to the salon that day &just see if anyone could fit me in. Often it's the stress of worrying you are going to cancel again that brings on the feeling "I just can't make It!" If you really need a hairdo...buy a wig.....they are brilliant these days.....I've had loads of compliments wearing mine!
Real friends understand, & if you can plan something with more than one person, you know you aren't leaving one friend at a loose end if you need to cancel.
One thing I have realised too......is once you are on meds that seem to be working....force yourself to get up to make a cup of tea...or to do something small...I still find if I feel horrible when I wake up......if I make the supreme effort to get up 9 times out of ten I do cope. On the tenth time...just give up & go back to bed. Tomorrow has to be better.
I know that all sounds a bit PollyAnna...but you've got nothing to lose!
Thank you for your reply..It was so heartwarming! I really love your attitude. It really does cause me so much stress to make plans. I decided not to make plans too often and it reduces that stress. You are so right that it causes stress when I worry that I may have to cancel yet again. I have a couple real friends who understand and I see them as such a blessing and I need to concentrate on them and not on the ones who have little empathy or none at all. I have been thinking about a wig!! I have never ever worn one but would not be against it on the days I just can't go to the salon.
I do make myself get up....well my dog makes me get up☺ usually once I am up I begin to feel better after a good cup of coffee. Sometimes later in the day I have to lay back down. It's so hot here right now...today was near 100 degrees!! I find my joints in my fingers really hurt even in these hot days. I just wanted to say thank you so very much for making me feel not so alone in all of this. Blessings🌷
Hi BJ...glad my ramblings helped. I know it does sound as if I am a control freak...but over the years I found if I just let the RA win all the time I never got anywhere.......& I will not let that happen!
Where are you where it's 100 degrees....I want to be there. I spent all day yesterday watching the rain in the cold & even ended up turning on my electric blanket last night.
Strange you mention your finger joints....I have just spent half an hour with my hand in ice to shrink a swollen knuckle to remove a ring....together with copious amounts of body lotion it's off! I felt so stupid the last time I had to get a ring cut off.....the low point being when the walk in unit couldn't cut through the ring & said I'd have to go to the Fire Station where they have stronger cutters. ..oh the indignity.....but luckily one last try & they managed to cut through the ring.
i hope things keep going well for you.
Hello again AgedCrone,
Oh my you make me smile when I read your posts, your say it like it is and I find that delightful😁
I live in Kansas and the warm months can be brutally hot!! Since I am new to lupus I never realised the sun can be so detrimental for us. Since this last flare I have become very aware of its affects. I bought some really good sunscreen and a wide brimmed hat...I have never worn a hat in my life and I think it scared my dog!!!
So sorry about having to have the fire dept. Cut your ring off! I can only imagine how you felt. I can no longer wear my rings. The knuckle joints have become a bit deformed on 4 of my fingers. So I feel your pain. I do hope you are doing well and i hope we chat again soon.
I do exactly the same. My routine is to get myself to the shower. Stand under the lovely warm water and wash my hair. Then a bit of makeup and a quick dry of hair. Then exhausted 😩! Breakfast and if someone comes to he door at least I look ok. This doesn’t always work if I’m in a bad flare but does a lot of the time. We all need to keep trying and remain positive. This site is a godsend. I hope that you are having a good day. X
To be honest, i need to learn to speak up and stand up for myself more, I think my generosity and selflessness is what’s wearing me out. I just suck it up usually and do things through pain, no matter what it is, I usually do them, because people rely on me or because there’s no one else to help. On some occasions I’ve spoken out about how I feel and I’ve received a slight annoyance in the voice or lack of help or understanding.. people don’t generally understand what they can’t see. If I could manifest bleeding cuts all over my body and ripped muscles and an axe in my head I’m sure people would be more understanding and helpful. Only people I can rely on is my husband (most of the time) he’s a baby when it comes to just having a flu.. or our friends. But anyone else even my mother doesn’t really seem to get how I feel on most days.
Thank you for your reply. So sorry I didn't get back to you sooner. Went through a lupus flare and got really down. I tend to shut down and just get through it. I have also learned to speak up for myself and that's when I learned who cared about me and who did not. That was a real eye opener. I stopped being so generous and selfless and I also received annoyance and lack of empathy. Well that's on them! It still stings though at times. It's good to be able to come to this forum and hear from others like you who endure the same thing. Thank you!!!
Hi 👋🏻 thank you for replying! I try very hard not to expect people to understand and not to get upset when they don’t. I know many people say they do but their actions show they don’t, and that’s ok.. it’s only natural for people to prefer to be with those who are healthy and like themselves. Everyone judges by appearances. I take care of mine, always have been and that’s not going to change, I am very proud and hate pity because it’s not genuine caring which is rare to see. But there’s no way to win really, I don’t bother and I get pity and feel worse about myself or i bother to get dressed and take care of myself and people expect I’m fine. 🤦🏼♀️
I am trying to not get upset too when others say the care but their actions prove otherwise. I find it is just lip service and not at all empathetic. I, like You, do not like pity and take care of my appearance and I care about how I look. It can be exhausting to just wash and blow dry my hair but it makes me feel better about myself. I used to get my nails done but had to give it a break because my nails are tearing and splitting right down the middle of the nail bed. Wondering why? The rheumatologist said it could be due to the Raynaud's syndrome. My nails may mot be getting a good enough blood supply. Anyway....so glad to chat with you. It helps to know others are dealing with the same issues.
Aww keep it up! I know it’s super exhausting to even take care of yourself most days. My hair and skin has been terrible, premature ageing and very lifeless thinning hair, I literally have clumps of it falling out in the shower. Have you been diagnosed yet with a specific condition or are you still researching into the symptoms and looking for the root cause? I have not heard of the Raynaud’s syndrome, I will look up. Big hugs!
Be kind to yourself. You have an illness and you didn’t choose to have it. I am surprised at how much support that I get from friends and family. I must admit I’m really bad days I do not want to see anyone ( well them to see me ) in the state I’m in apart from family. I’ve explained what’s going on to my real friends but when we meet up I don’t go on about the fibro. I think for everyone including myself that it’s better to chat about more uplifting matters. Some people just take a bit longer to understand. Your mum will eventually see what you’re going through. Please be as kind to yourself as you would be to someone else with a chronic condition. X
Hi, thank you for replying ❤️ I know I didn’t choose to have it but since I’ve fallen ill I have realised that poor lifestyle and diet choices are what most likely led me here. I only have myself to blame and my lack of knowledge and understanding. However I must admit I am of the same mind-frame where most of the time whenever I am with family and friends I choose to focus on the positives and avoid talks about my health and other things that may bring me and others more stress. It hurts that my family show no interest in my wellbeing and never ask me how I am or if I need any help. I know living back at my parents place at my age is a nuisance and I get that.. but I just expected them to be sympathetic and at very least show they care. I think because I take care of my appearance and push through to do every day tasks people just assume I must be ok. I wish someone said, let me take care of this or that, you need rest, let me help you, or I’ll make dinner, you just take care of yourself tonight..sigh, I can only rely on myself. x
Hi. Yes I have a kind hairdresser, thank goodness, one less thing to worry about... Just admit I currently resting waiting for my husband's family to visit us for the week...understanding my health issues is a problem, that they don't quite get, we will see if this visit is any better. Mind you i barely 'get it', will try...keep cool sounds very warm.....ml
So glad your hairdresser is kind....that really makes a huge difference.
Did you guests arrive yet? I am sorry they don't quite get your health issues. That is really a touchy subject for me as well. Concentrate on the ones who do "get it". I have a good friend who lives in Ohio who may come for a visit and she "gets it". It makes all the difference. Hope you are doing well. Thanks so much for your kind words, usually that's all we need.
Thanks Barbara, though our visiting family is camping nearby, hubby seems to be doing all the cooking & cleaning all of dishes so not much a holiday for him...I have been able to hide & rest (,really tired from week & cleaning) felt better yesterday, more energy, very sleepy...ml
Headiding to sleep..ml
Everybody's replies are so helpful. Having to cancel plans is one of the hardest things about lupus for me. Some friends understand, but even so I feel so bad and disappointed if I have to cancel an appointment or miss a date with friends. Then there is the temptation to push too hard...
My daughter recently organized activities for us when I visited her in New York. She is very sensitive to my condition, and planned just one secret activity each day. They were secret because she knows that as soon as something is planned, I worry about not being able to do it. It felt so good to be free of that, and just enjoy my time with her. I may put folded notes of pleasing activities in a basket and pick one each week, so that I can continue that pleasure.
I also want to try the suggestions here about drop-in appointments -- that seems very helpful. Thanks for bringing this problem up, Barbarajeand. The unpredictability of lupus leads so easily to terrible anxiety and sad isolation. We need to keep discussing the ways lupus affects us and helping each other. This forum does that so well.
Sorry you have to go through this repeatedly.
The first Ito do is to explain your health problems and limitations to whoever it concerns. Then when canceling appointments occurs you needn’t feel badly about it. No need to feel like a failure... it’s your reality. Assuming negativity only causes more stress to add to the mix of suffering ...no one wants or needs that for sure!!!!! Be kind to yourself...after all you deserve it!!!🎈🎉🎊☕️🍰🍧☀️🌺🌸🌷🌸💐👏👏👌😊🌸🌿🦋 🤗💕😘
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