Hi all! Here's our last question: Do you have any advice for someone dealing with loss? ... View more

Wow, @scared01 that must have been so upsetting. :( It's always really disheartening when doctors don't seem to express much hope or offer any kind of solution. I really don't know what else to say, that's really bad news. I hope it doesn't end up affecting your life too much. That sounds so painful! Have they ever tried anything like using a device to look at your veins? My sister also has trouble with blood tests and I think they used it once. Unfortunately, she has a needle phobia and chronic pain so it is quite an ordeal for her. Once they gave her something like a sedative beforehand but it made her act really strangely afterwards and we all got worried, but luckily she was fine after the effects wore off. I think laying down is a good strategy. I tend to get some 'warning' signs before I faint that tends to alert me and other people when it is about to happen, so that's good at least because it allows me to lie down or be seated. I hope so too! They did a bunch of different ones, so it's hard to guess which ones are significant. I hope everything goes well with your tests. ... View more

@TawnyOwl  I wonder what it is too! I think it has to do with light, wind, exhaust fumes, navigating, etc. When I am on buses or trains, I tend to sit towards the back and don't get as exposed to as much wind, light and other things as being in a car and I don't have to concentrate on looking out the windows because I have apps that alert me when I reach the right stop. My sister and I got to play Super Smash Bros Ultimate with her physio today! It was a bit hard for me to see the TV at first, but luckily my vision got better after I blinked a lot, which sometimes helps because my blurred vision is caused by an unstable tear film. According to my cornea specialist, I will always have this kind of eye problem but it might wax and wane. Two things I have tried have helped somewhat with my eyes watering and itching, but unfortunately they haven't helped my other symptoms and he doesn't thin anything will help completely. CFS sounds like a pain, especially when you can't avoid the triggers or don't know what they are. It sounds like something that would interfere a lot with your daily life and be really frustrating. :( ... View more

@scared01  I'm sorry that the appointment didn't go well. :( I'm so sad for you that it's going to be permanent. What are they doing in terms of managing the symptoms and providing supports? Ouch! The blood test sounds painful. I had one this week as well. Like you, I also have difficult veins and they usually can only use one, but it is thin. Sometimes, that vein collapses too, so they have to either find a deeper and more painful one or move the needle. Sometimes, I become lightheaded while trying to help them do it and fifty people end up surrounding me and elevating my legs. When I was in hospital, it took them three different attempts to properly insert a cannula and get IV antibiotics working and I ended up with lots of bruising as well. Luckily, another anaesthesiologist got it right the first time the month after. We have found that when they use a butterfly needle (it looks like it has wings/handles on it and has a tube), I don't have these problems and I don't experience bruising or much pain. Unfortunately, the pathology place and hospital I've been going to for years don't do that, but luckily I found another place that did that when we asked them to. They've also told me to drink lots of water beforehand to try to prevent the problems. The tests sound exhausting! I don't like early morning tests. It's bad that you have to wait so long for the day surgery one too. Because I am a private patient, I usually don't have to wait long for procedures. I know some public patients who have really suffered with long waiting times for the same surgeries I've had. I feel sorry for everyone who has to wait. I'm so sorry that no one can come with you. :( I think that social support is really important when you're going through something like this and you deserve to have someone by your side. No one should have to go through an experience like that alone. I haven't seen the results of the tests yet, but I was told by the GP's receptionist that they found a few things so I have to come in and discuss it at the end of next week. I have a family history of some of the things they tested for and I thought one of my levels was going to be a bit worse than when they tested previously, so I'm not all that surprised or worried. It doesn't sound urgent. ... View more

Happy Thursday everyone! What are some good resources and things that we can do to help cope with loss? ... View more

@Bre-RO  That's so cool! I've never heard of him before. I like watching videos of people creating things like soap, cakes, scrapbooks, etc. Some YouTube channels have tutorials that don't work or are dangerous though. I find the ones from individual creators to be better. Some good ones are How to Cook That, Moriah Elizabeth and Royalty Soaps.  ... View more

@Bre-RO  I used to love Art Attack as a kid! Thanks for reminding me about it. :) @Ngandabaa  Thank you so much for chatting with us and sharing your story and tips! I've learned so much. ... View more

I love looking at artworks, museums and crafts online. One resource I've found is Google Arts and Culture. I also like looking at pictures of nature, so I like websites such as Atlas Obscura too. There are also other websites where you can share your artwork like DeviantArt.  I also love websites where you can create your own artwork, such as Silk. I remember I used to love one where you could draw and paint with virtual crayons, pencils and paintbrushes as a kid but I can't find it now. ... View more

@Tiny_leaf  That sounds so exciting! You'll be able to feel a sense of accomplishment when it's all finished. I haven't changed the look of my room in a long time. Some years ago, we changed the colour of the walls from a lilac colour to shades of dark blue and light blue and got new furniture and a nicer bed. We added a nice warm rug too. It was so much fun! I'd like to add things like pegboards (I've seen a few cool ones) and other decorations but haven't had time. ... View more

@Ngandabaa  That's so true that art doesn't have to be perfect. A lot of beautiful crafts and artworks are actually designed to be imperfect or asymmetric. Some Japanese designs come to mind. ... View more

@Ngandabaa  What a nice story! I love the detail in that picture. :) You did a wonderful job with it! ... View more

@Hozzles  I can't find myself committing to designing full bullet journal spreads. What I've been doing is using journaling apps to record photos and how I feel. I've also been using a notebook for some creative things. One of the things I put in it was a chart to record the weather using lots of colours. ... View more

@Ngandabaa  @Hozzles  I enjoy writing and scrapbooking too! I've been trying to get more into scrapbooking recently as I used to do a lot of it when I was younger. I've thought about putting all the things I like to look at into an album. I've also been meaning to try colouring in but I haven't had much time. ... View more

@Ngandabaa  I think it's so wonderful how you've become more connected to nature through your artwork and able to appreciate natural things more. I also like looking at nature and being in nature. ... View more

It's great that creativity has improved your wellbeing @Ngandabaa! I've found that creativity has helped me express how I feel when I've gone through tough times too. I agree with @Hozzles and @JazzInMay. I think your artwork is beautiful. :) ... View more

Hi @Ngandabaa! Nice to meet you! :) ... View more

@TawnyOwl  I totally agree. It is a bit hard for someone to imagine not being able to do the daily activities that they are used to doing. It can also be pretty disappointing to not be able to do things that you previously enjoyed doing. My eye symptoms vary depending on what I have been doing that day, how I've slept, and things like how much light I am exposed to and the weather. Sometimes I can do things and sometimes I can't. Sometimes my family members can't understand why I can read an eye chart sometimes, but can't see at other times. I have some trouble tolerating activities that require staring or concentrating. Some of the worst triggers are navigating, being in a car (even as a passenger), driving games/simulators, and sometimes even just trying to follow instructions, look for something or listen to what someone is saying. The strange thing is that going on buses and trains aren't as triggering as being in a car, but I usually end up using an app to navigate because sometimes my distance vision gets blurred and I can't see signs. I used to be better with those kinds of triggers. ... View more

Hi @Anikan! Thanks for updating us! I hope you are doing well. It's great to hear from you again. :) ... View more

@Tiny_leaf  That must be so frustrating! :( I wish food labels would be more clear. I have a family member who can't have gluten and is also lactose intolerant, and I also have to read food labels too. It is really annoying when food labels have an ingredient that I have to include as part of my diet, but then they go and unnecessarily add something else that I have to avoid. I hope the side effects aren't too bad and that you can feel better soon. ... View more

What do you define as a loss? What does loss mean to you? I think everyone's answers have been really great so far! I think that loss doesn't necessarily have to mean losing a loved one, but it can also mean having to deal with a change of some sort. For example, a loss could be being sick or having a family member become sick or disabled. I personally perceived my sister's ill health as a big loss in our family. Life as we knew it was changed. When you become a carer, there is often no instruction manual or any information at first. Some hospitals just expected us to stop everything else going on in our lives to care for my sister 24/7 without having any kind of plan or support. In some ways, I wish she had another health problem that would be easier to treat and manage. I wrote a note on my phone the other day about what it is like to be an unpaid carer without any external support: There is a loss of freedom to do what you want. Whole days and plans revolve around the person you care for. Imagine trying to get on with your daily activities - having a shower, having a meal, going to the bathroom, sleeping early, going to work, but having a sign on the door saying that you can't do that thing at the time you want to do it because your family member's needs come before your own. It is also like having a broken alarm clock that wakes you up at random times, no matter what time you've set it. These disruptions become more frequent if you are caring for multiple people at once and/or if you have health problems that interfere with daily tasks. Here is an article about how disability can affect a family that I found helpful in the early stages of my sister's illness. Our situation has affected us a lot and everyone has responded differently. It has affected my relationships with other family members. My maternal grandma cries whenever we talk to her and doesn't visit us very often because she can't bear to see my sister like that. My dad also copes by being out of the house (which unfortunately means I've often had to stay at home to care for my sister and don't really have much of a social life). My mum often says that she would not have had children if she knew that we would have health problems. We've also argued with each other about my sister's treatment. How did you deal with/cope during a loss you've experienced? I am still learning how to cope with loss myself. I have tried things like gratitude journaling, focusing on positives, distracting myself, self-care, keeping myself busy, venting, writing down how I feel, self-help techniques, volunteering and using my experience to help others. I also try to reach out to external supports. I know I get very bitter about my sister's hospital on here but I found them pretty useless in terms of offering any kind of support to me or things that would make life easier for me. A lot of the supports that we've found helpful have come from people/services we have found ourselves. Here is another article that resonated with my experience and provides a few tips about ways we can cope when a loved one becomes disabled. ... View more

@scared01  That sounds so full on. :( It can be so hard having a lot of appointments at once whilst juggling all of the work that you have to do. I really hope that serious problems can be ruled out and that everything turns out okay. I totally understand you not being around as much. I had another 'review' test yesterday. The results haven't come back yet but I don't think anything will be wrong. I have to take a family member with me when I have this test because something usually goes wrong and sometimes I become unwell afterwards, but this time we went to a different testing place and they listened to the problems we described with the other places and used a different method that didn't result in these issues. We were so happy! We will go to them from now on. ... View more

Hi @TawnyOwl! I think that explaining an illness to people can be really tough. I am still learning how to explain my health problems to other people myself, which isn't easy because there is a lot I still don't understand or know about them. What a lot of people don't know is that there is a lot of heterogeneity or difference in terms of how people experience illness and between different kinds of chronic illness. Some people have only a mild form of the illness, while other people have more severe symptoms. Some people have symptoms every day, while some people experience 'events' every so often with no symptoms in between. For me, spoon theory fits in with my eye problems really well because they can be made worse by doing everyday activities and as the day goes on, but it's hard to apply it to my kidney stone problems because they only cause problems for me when they drop into my ureter. People's symptoms and triggers can also be variable, so it can be hard for some people to understand them. With my sister, she can do some things with our mum but not when other people are watching. Her physio told us yesterday that sometimes people cannot walk in her clinic but they can walk around in the carpark. I think these points are really helpful to make when explaining chronic illness to people. My parents still have trouble understanding my conditions despite being in the medical field. My specialists have tried to explain them to them, but they still don't fully understand them. Sometimes, the specialists use metaphors to explain things to them and one of them used to give us factsheets (your specialist may have some if you ask for them), point things out on models and show us photos they took during surgery. With some of my extended family, I've found that showing them resources helps, especially if they prefer written or more academic sources of information. I've also found some diagrams I've seen online to be helpful in understanding my conditions and explaining them to people. What kind of information people understand tends to depend on their personality and I find that the more I read about my conditions and reflect on my triggers, the easier it is to explain them to people. I think it also becomes easier to explain to people if you've had the condition for a long time and have discovered what helps and what triggers it. It is a very much an ongoing learning experience and there can be a lot of trial and error involved. We also have an article with some tips about how to explain a chronic illness to people here. ... View more

@musicfan_xo  They can be anything like not compromising your values, not sacrificing your work, friends or family for someone, not changing your beliefs, not letting them use your belongings or get access to your accounts, etc. They can be things that you're not comfortable with them doing too. For example, one of male friends once stole my login details for a paid online service while he was at my house, and then he used my account and pretended to be me online back at his house without telling me. I didn't forgive him after that because I thought it was quite a major betrayal and he basically had free reign of the bank account attached to it. Luckily, I caught him doing it before he was able to spend any money because I happened to log in while he was on the account. He never admitted it was him, but after I changed my password it stopped. Since then, that kind of thing has been a dealbreaker for me. ... View more

@musicfan_xo  I'm glad your parents are supportive. The guy sounds nice too. :) We actually had a discussion about boundaries recently. We've also had other discussions about romantic and sexual relationships. One boundary could be only meeting in a public place, which I've done with an online friend before. Another boundary could be about certain things you don't want to do for someone. ... View more

@musicfan_xo  I think those are pretty valid concerns. I've been in a few situations where someone I thought was a friend or who I was helping out started saying creepy things or trying to take advantage of me being there for them. It's disappointing when something like that happens, but there are also a lot of nice and caring people too. Something that has helped me is having an idea of where my boundaries are, my values and how I expect to be treated. ... View more

I'm sorry you're not doing okay right now @Tiny_leaf. :( I hope you can feel better soon. Here for you. ... View more

@ecla34  I love Legally Blonde too! I saw a local production of the musical too. The tickets were really cheap, but it ended up being great value. They really put on a great show! @Janine-RO  I saw the Powderfinger concert too! I wasn't much of a fan of Powderfinger back when they were popular, but I watched the show with a family member who loves them and it was awesome. Hairspray Live is on this weekend on YouTube. I've already watched that production but I watched the whole thing again! I think the messages are really relevant for the world right now and it's a pretty feel-good musical. Something I have been trying to do while staying at home is trying to finally finish reading The Count of Monte Cristo. It's taken me many years to finish reading it because it is so long (it was originally released as a serial and I'm reading the unabridged version). I don't get bored of reading it though and I really like the story. I didn't know it was based on actual events until today. One movie that makes me happy is The Lego Movie! I thought it was going to silly when I watched it in cinemas, but I ended up loving it. Whenever it is on TV, I get excited. I watch it when I need cheering up. It still makes me laugh. ... View more

@musicfan_xo  I hope the GP continues to be helpful too! I think a big part of treatment is being able to trust the provider. It's great that seems to be caring and understanding. I'm sorry that your former crush didn't work out. :( But I'm glad that you've found someone you can connect with. I think that realising you have feelings for someone can be an exciting and nervous time. What do you feel anxious about? ... View more

@Hozzles  That's happening for me too! I was going to post about it yesterday but I didn't have time. Some questions I'd like to ask are: - How can creativity improve our mental wellbeing? - What are some easy ways that we can get creative, particularly for people who don't consider themselves to be very creative? - What are some useful resources we can use to admire art or get creative while staying at home? For example, apps and websites. It sounds like it's going to be a great chat! I'll try to be online for this. If I end up doing a medical test that day, I hope I can be well enough to join in later. ... View more

@musicfan_xo  I'm so glad your new GP was helpful! I'm so happy for you that the guy you talk to likes you back and that you've found someone you can relate to. I get your parents' concerns, but I'm glad that chatting to this guy has lifted your spirits. :) ... View more