Dealing with family/friends/general life whilst investigations are pending - Please help!

[Leenie0811]

Morning Everyone,

I really need some advice, I am in the process of testing/reaching a diagnosis and I understand this can be a long one. My journey started in October last year when work started to pick up on my absences which has lead me to investigate my symptoms, I thought they were different things at first but now they all link and the doctors are questioning SLE or a connective tissue disorder. I'm still awaiting my referral to a specialist.

Recently it appears I have become really hard to live with, a few family members have commented on my mood as well as my partner bringing it up numerous times a day. I understand they want to help but sometimes I cant help but think all they want to do is boss me around or tell me what I should or shouldn't be doing - this can be in general or my doctors appointments.

I tried to explain to two of my friends the doctor was investigating the symptoms and what they thought it could be and they told me not to look into it too much as the mind can be a powerful thing, what is that supposed to mean? Do they think its all in my head? My mum has chronic health conditions so she seems to understand more what its like but she even says, you should push more or maybe you shouldn't go out for that long you'll end up feeling worse the next day.

The one I feel for is my partner because he gets the brunt of my short temper from these comments when he really is trying to help, I know he is but he too comments like this and says he cant go on like this anymore as his life is becoming miserable. I wish they could all come live in my shoes for 24 hours then maybe they could see why its so down and frustrating.

Can anyone help me out with ways they cope in the midst of all the uncertainty? If anyone has good ways of dealing with those around them so it isn't so hostile I would be really grateful! I am frightened of being left on my own with nobody to talk to if I carry on the way I am.

Thank you

Leenie x

[Poppypig]

I'm waiting for my appointment too and am a horror to live with for a lot of the time People sometimes speak without thinking with the "mind" thing but it is very hurtful isnt it. Try to be honest with people and talk to your partner. I think we all pretend to be okay when really we aren't and thus the frustration, tiredness, mood swings, irritablity kick in. I give myself lots of time out now when I feel rubbish, and family are kinda getting used to that. I do meditation (insight timer app free), crosswords/puzzles, gardening (if I can), lots of sleeping, basically being on my own a fair bit - it works for me but you have to find your own way. I found the biggest battle is believing yourself and listening to your body and not fighting against it. Good luck

[Leenie0811 in reply to Poppypig]

Hi Poppypig,

Thanks for all your little hints and tips, I know my friends didn't mean it like they said because one did message me to ask how I was getting on with the doctors. I think I am just really sensitive to the whole process, when you're in limbo and don't know what's going on it seems everything drags on for so long.

My partner is worried about our upcoming holiday, which I can fully imagine as the way I have been I don't think anyone would want to go on holiday with but I have a feeling it will be better there. No pressures of getting up for work, able to sleep and generally relax. From what you've put I think its going to be essential I have that me time, I'll download the app you put too and give it a try. I haven't done any knitting or reading in a while so I think I will give that a go, try and take my mind off everything. I also agree the hardest thing is accepting the signals to rest!

From a child I've always needed that time alone so I'm going to talk to him tonight and make sure I can take that time when I need it, just hope he understands when I do tell him because its not a reflection on what he is doing.

Thanks again x

[Poppypig in reply to Leenie0811]

You sound so much more positive now and enjoy your holiday, just a suggestion but if he struggles to understand just show him this thread.

[Leenie0811 in reply to Poppypig]

I took your advice and he was really accepting towards me needing my own time, I said if I feel that way out I will do my best to let him know but he also said if he feels like I could be going like that he would ask if I needed a bit of space. I think my next task is to get some more enjoyable things to do when I feel down - I feel a good list coming on! Thank you again for your advice x

[Lupiknits in reply to Leenie0811]

Get back knitting! OK, I am a knitaholic, but it’s used as therapeutically stitchlinks.com

Sorry, just edited to apologise for briskly issuing orders x

[Barbara17 in reply to Lupiknits]

Hello Lupiknits. Thank you so much for the link to stitchlinks. I’ve been knitting for more years than I like to remember but have never mastered crochet. Thanks to you I’ve just found a beginners guide to crochet in a 16 page booklet which looks as if it is simple to follow. Will give it a go while I’m avoiding the sunshine this week!

[Lupiknits in reply to Barbara17]

You’re talking to a pathetic crocheter. It wasn’t until I found a YouTube video specifically for those who can’t handle crochet because they can only do it knitwise that I was able to do some, but twisting wrists are a killer. The way I knit doesn’t require that and I’m actually able to do some in wrist splints.

Best of luck with it x

[Barbara17 in reply to Lupiknits]

Thank you. Will let you know how it goes. It’s always really annoyed me that I can’t crochet but you might be right and I won’t be able to cope with holding the hook the right way.

[suzannah16 in reply to Barbara17]

try you tube videos. the crochet crowd, marly bird and jayden in stitches are really good. just put in "how to crochet" or something similar in the search box. all the videos can be slowed down if needed. I learnt from you tube. I am now a yarn addict too

[Barbara17 in reply to suzannah16]

I managed to master a granny square with the help of You Tube but would like to move on to using patterns.

[Lupiknits in reply to Barbara17]

Took me ages to get a square granny square! The American and British terms for stitches are different, so you need to watch out for that x

[Barbara17 in reply to Lupiknits]

Yes, I noticed that! I never even attempt an American knitting pattern as the terms are just so different. And they seem to have an obsession for circular needles!

[suzannah16 in reply to Barbara17]

as most of the best crochet videos are done by americans I use their terms for stitches. well done on your first granny square. there are quite a few patterns for jumpers and tops that are based on squares. I sometimes find a blanket pattern and use that to make jumpers. yarnspirations have patterns and links to youtube videos on how to make things. I have so many ideas but i'm not quick enough to get them all made.

[Leenie0811 in reply to Lupiknits]

Hi Lupiknits,

Thanks for the link, I still have some left over wool kicking about somewhere so I think this weekend will be the perfect time to start knitting again It really can be so therapeutic knitting especially when you get in the zone, for me hours can go by and I havent even noticed! x

[panda2 in reply to Leenie0811]

Love how this sad thread of yours has morphed into something so productive and creative and self-satisfying, Leenie!

I'm a wool freak too. And I'm a North American who lives in Britain, so talk about landing in a world of confused stitch talk! I think I'm half everything now, trying to crochet with circulars even. ; ) I've been knitting forever too and only just tried crochet while healing from a previous illness a few years ago after watching YouTube videos like suzannah16 suggested. Didn't get the granny square down, but did manage 40+ hexagons! Well....some would pass for hexagons. : )

Wishing you many healing hexagons or granny squares.

Panda x

[Leenie0811 in reply to panda2]

I know its taken quite a turn but I can surely say when it comes to the weekend I have lots of things to try out! I can sympathise with the confusion I was taught to knit by my Nanna but being left handed I ended up learning her way so I’m kinda ambidextrous now.

The most ambitious I’ve ever got was a scarf, there’s definately lots to learn! The granny square sounds so intreaguing, think this might be the first challenge. Thanks for coming along and commenting too panda2 all this wool talk has got me my creative mojo back x

[panda2 in reply to Leenie0811]

Ambidextrous knitters are the best! Nothing like a little wool talk to inspire us all! Px

[Hidden]

Hi have read your post and I just wanted to say no one but you knows how I’ll it makes you feel and how hard it is to get through each day when clearly you are quite unwell. Thank heavens your seeing someone who can help you get a diagnosis as you deserve to get answers. I can’t believe the comments that you have had to endure as words can really hurt us i would be fuming. When you need support understanding and patience it’s not what you want to hear. People can be so cruel sometimes and they think it’s perfectly fine to say whatever they want but I think if they were in your shoes they would expect some compassion, a good dose of support, patience and a little kindness. No wonder your not feeling good about the little digs and unkind words if I ever have a similar issue I tend to take to my room and avoid every one. No one knows like you do how debilitating your conditions effects you. They ought to be ashamed of themselves. No wonder you feel the way you do. Do you have supportive family or friends that you can talk to as we all need someone on our side. Do you have anyone who can take you to your appointments as it would probably help if you had someone to fight on your behalf so you can save your strength. I hope everyone around you realises how difficult this is for you. You need to put yourself first and rest and soon you will see someone who can find out what conditions you have and a way to get you well. Wishing you a great week. Take care. Elena

[Riddlemethis in reply to Hidden]

Very true Jeromicus. Surprising how you find out who’s really a good soul and who’s not when your health condition does what it does to you , ignorance is not bliss and if it is for some then you must be ignorant to life and how it can change in almost an instant . A serious health condition that restricts life a hell of a lot more is a big deal for the sufferer , you can’t do simple things at times etc etc , anyway thumbs up 👍🏻 on your post , straight to the point and true , many thanks for a great read 👍🏻

[Hidden in reply to Riddlemethis]

Thank you and I hope and pray that the specialist you see is a good one. Try writing down all your conditions, symptoms and if their are pictures of anything at all add them too. Also if you can get as many medical notes as you can. Read through everything so you can answers the questions as it’s amazing what they ask you. Take someone who can come with you for support as it’s exhausting trying to get your point across. If anyone at home says anything negative I would just say I think I need to lie down and walk out of the room. Take to your bed and it gives that person a chance to think on what they have said to you. I use it all the time it works wonders for me. 😂. Good luck and have a great week. Let us know how you get on. Cheers. Elena.

[Leenie0811 in reply to Hidden]

thank you for the kind words, I can sometimes have support from people but then sometimes I think if I have been discussing the symptoms I have too much then I think they lose interest.

My partner can only do so much talking about what goes on but I've come to understand he doesn't like discussing it too much as it frustrates him how long we have to wait between tests and GP appointments. He wants me to ask to be referred to the Rheumatologist rather than wait for the GP to send me. Sometimes we can argue about this as I don't like to seem pushy in the doctors so I have asked him to come with me when I get my next set of blood results to see if he can help me get more out of the appointment x

[Hidden in reply to Leenie0811]

I totally agree with every word you say. Sometimes partners don’t understand I know mine changes the subject and says your fine. 😂. It’s awful some days your ok the next your not. I hope you find stuff that helps you and you feel

Much better soon. xx. Elena