#cf. 'if you stay friends with your friends long distance when you are no longer IRLs you are a real one'

[hypokeimena]

The base honour their friends only when they are present; the good cherish theirs even when they are far away; and while it takes only a short time to break up the intimacies of the base, not all eternity can blot out the friendships of good men. (Loeb translation of Isocrates' Oratio 1. ad demonicum)

thanks isocrates i also love my internet friends

[dahpurplehatgirl]

So I didn’t think I would upload this on here but this is something I did for this years CF week.

⚠️The following dose contain talk about Coronavirus and Cystic Fibrosis. I know it’s not easy talking about it and it sure is something people struggle to read. So this is your small warning. Before I start this... yes...I spelt Shielding wrong all this time. So please don’t yell at me. I get muddled up with words and spelling is something I’m never gonna master. So yeah. For now here’s the Lockdown and shielding and what’s it been like. ⚠️

🔒LOCKDOWN AND SHIELDING 🛡

Never did we think that we would spend this year in a pandemic. And for someone with a high chance of catching something that can cause more respiratory issues is a big problem. I’ve had a few virus in the past the worst one I’ve dealt with was influenza (Flu) and that really didn’t settle well.

So what about Coronavirus?...Well...As it’s causes issues with reapitory...Yeah...I’m glad we went into lockdown and been told to stay at home. When I was first discovered and then came into the UK I got extremely anxious about catching it. I’m a person who panics when something wrong with my body and health. So attending hospital was a worry. Public transport was a worry and I stopped socialising. This was before the guidance was told that the UK was going into lockdown and that a guidance for high risk groups got something called Shielding. And it’s still going.

But what about someone with really bad mental health being around this time?... Well...It’s not been easy I’ll say that. For one I have OCD and that’s been all over the place. To a point where I was struggling to trust others and scared of touching things, I even kept 2 meters apart from family when in the house. Only now I feel comfortable for human contact and realised you don’t have to do that. It just make my mental health feel more at ease.

Anyone who is shielding isn’t allowed out to go shopping or pick up meds or see people. Until recently. Excise has been slashed too. So I was lucky I still have my parents to pick up meds and food ( there have been a few times I had for biscuits and chocolate ^^; ) and yes at first I was a lil scared at touching things but I’m getting better. I get some meds delivered like Promixin and my Symkevi and Kalydeco. It took me a while to get used to people being in the house working. In fact it’s been better for my mental health. I’ve been managing to do treatments. And keeping my self busy. Tho I’ve been washing my hands...A LOT ( and still am)

But at the beginning I was relaying on news and social media. Unfortunately there was so much information and misinformation and fake news it really pulled on my anxiety so for a few weeks I stopped looking and watching the news all together ( and still do. I just read guidance from GOV,NHS and CF trust. )

Now that control the virus is the new rule and Shielding is still happening. Things are a bit normal. For one we can see family members who you don’t live with again as long as you keep 2 meters apart and friends as well. Which is nice. And just recently July shielding people will be allowed to meet family and friends outside from their home and in August it will be paused meaning we can go back out, go shopping and try to live a normal life. For me I can’t wait to go outside for walks but my anxiety has been so bad and I’m very...Twitchy about stepping outside. I’ve only been out twice during lockdown and that was to ( where my CF center) has moved as they moved out of my normal hospital so seeing them to have my portacath flushed and meds like Meropenem being picked up. It was huge and I was very thankful for my CF team. And Threapy has been done by phones and online work.

lockdown hasn’t been all bad. Sure it’s been strange and frustrating. But we’ve been doing stuff to keep it entertaining. Like quiz night every Saturday and I never thought I’d get back into Animal crossing. I’ve been gaming with friends more online and I’ve got back to art and projects.

I won’t lie, lockdown wasn’t easy at first especially being unable to see my team or friends. But now it’s easing. I’m still anxious when I go outside. But I’ll get much better. I’m following the social distancing guidance and I I’m still washing and showering when I get back in but I think I won’t need to do it for walks around the block. We’re still having people come in the garden until it’s safe for them to go vist in the house. So yeah. It did mean I was able to spend Farthers day with my dad.

This hostly is the ‘new’ normal. I’ll I’ll keep shielding until it’s safe to go back to outdoor things. It may just take me a while longer cause of my anxiety. But even if wearing face masks and keeping distance from people I’ll still be able to get back to some normality.

I’ve been sheilding for about...105 days now and there have been some breaking points and huge achievement broken. And just today a new (life changing medication) has been agreed for CF in the United Kingdom. So this is indeed some postive news.

I’m still trucking along and so are another 2.2 million people in the uk. With over 10.000 in the UK having CF. It sure has been a strange time for CFers but it was done for the right reasons.

( Thank you for reading, stay safe and stay strong. ) 💜

[boostmycreativity]

Imagine №: 7

C/N - Chrush Name Y/N - Your Name CF/N - Chrush Friends Name At this point, it was undeniable that you had a crush on C/N. But how often do you meet somebody like C/N. You got along really well and easy. Soon after meeting for the first time you got each other's jokes. You taste in music was different but you also had enough accordance. C/N told his friends your jokes and they laugh about it too. You spend quite a bit of time together. Texting at the days you didn't see each other at least in class. At some point, you and C/N meet up and spend one-day together. You talked a lot with each other. you got each other. At least that's what you felt. On the way back home. He fell asleep in the car for most of the time, while you were diving. Since then you had little contact with him. He was staying with friends. and you text him but his answers were short and he didn't join the "Conversation". At some point, you were just frustrated, particularly after seeing each other again day by day in school. CF/N "Whats up with you and C/N?" "I don't know." "Oh come on Y/N, something must have happened. Bevor he couldn't stop talking about you." "I don't know what I did to make him ignore me. I can't figure it out. But he also doesn't seem to want to talk to me." yo where quite upset at this point. "Okay, come down." "you know what, I don't want to be calm. C/N pisses me off. If he has a problem with me. Fine. I don't care. I thought I liked him. But I guess I'm happy that I didn't jet tell him. So I can just forget him." You grab your bag and got up. "Y/N I'm sorry I didn't mean to ..." CF/N tried to calm you "CF/N it's not your fault, I can thank you because even you noticed that C/N is different and I'm not just making it up. See you" It was a Friday. The Weekend was a welcome break in seeing and thinking about C/N. You had a great time with your Friends and forgot about C/N. Back at School, you saw him. This time you started ignoring him. He was with his friends and you with yours. Sometimes you looked at CF/N and he tried to smile but always as he saw you he looked pitiful. The weeks past. One day you stayed a bit longer. Most of the students where gone. The parking lot was nearly empty as you walked towards it. "Y/N" someone called your name. You look around. There C/N. "you're going home?" he goes on. You nod. C/N sill steals your worlds. Handsome, attractive. You always wonder if he knew how he appeals to others. A few seconds there is silence because you're still in your thought. "Umm. Yes on my way home." "Great. Could you give me a ride home. The tiers of my bicycle were slit. And I missed the last bus. You know how creasy the bus running times are here." C/N looked at you, with a hangdog look. "Okay, sure. Your house is still on my way home." you head towards your car, C/N follows you. He keeps a bit of a distance to you. No awkward distance like 2 meters (6-7 feet) behind you. Just a few inches. "aren't you gonna take your bike home?" you ask. "Umm." you smile. C/N still so adorable.you didn't want to think in that way of him. You remember yourself. "You can put it in the back of the pickup truck" "Right. Give me a second. I go back get it." You walk toward your care as C/N Get's his bike. You wait for him. He tries to get his bike on the platform but he seems to fail. You watch him do so in the review mirror. You get out again. "Wait, I will do it." you say. He hands you his bike and you load it up. He looks at you. You want to get back in the car. C/N still standing there. "C/N are you getting in?" He stares at you and then gets in the car. The car ride is rather short. And your still not in the mode to treat C/N like bevor. Even now you would have the change. As you pull up the driveway C/N says. "Thanks for the ride, hope it wasn't inconvenient." "No it's all ride, I get you your bike". You get out of the car and unload his bike. "Maybe you bring your car in a shop, or fix it at home. It should be cheaper and doesn't take much time." "I'm really not that talented whit technically stuff like you, maybe I try." "I could always help," you say quietly but still loud enough for him to hear it. "I will be going then," you add with the normal volume of your voice. "Thaks Y/N " you get in the car and dive off. The following day. C/N is back to bevor the evening. He ignores you. Not even a hallo. This time you decide to just completely ignore him too. a few days passe again. "Y/N " C/N called you as you walk out after class. You turn and wait. "Can you give me a ride" "Bike not jet fixed?" "no, I need your help to fix it. And nobody else can give me a ride ." "Fine whatever. sure I give you a ride." the conversation was minimal during the car ride. He was normal again but you didn't believe full. as you pull up the driveway C/N ask "so Y/N can you help fixing the bike?" "you have the spare parts ?" "Yes, I got everything. and even the guy in the shop met it shouldn't be too hard but I seem to not get it." You shut the car off. "well then." "You can do it now?" "Yes, now or never" you get out of the car. You follow C/N in the garage. The bike was leaning against the wall and the Spear parts, too. "Here it is." He sounds as if he would present you his newest accomplishment. "well, then" You sigh. " I get you something to drink real quick. Tools are in that toolbox and more I don't know eighter." C/N disappears and you look at the bike. you place it in the middle of the garage and start changing the tires. C7N comes back with some bottled water. " Here" he looks at you but your hands are already dirty so he places the botel on a shelf. "So Y/N, what did you do the last couple of weeks" "Not much school ´, fiends family." you really didn't know what to answer. "Okay. Y/N. please hear me out." you look up from the bike. he looks at you. He looks serious so you nod. "I have and I want to apologize ... you remember when we made the trip to ..." you interrupt him " Can you give me that tool, you point at a tool on top of the toolbox. He holds it towards you. You take it and say. " I remember our trip, go on" "Okay, well I was confused afterward and I meet a lot of finds directly after that I hadn't seen in a long time. And I just wanted to stop thinking about you and enjoy the time." The tool drops out of your hand. C/N stopped talking. You bend down to pick it up quickly. "I tried to ignore you. Then I didn't want to ignore you anymore but then again. and o on. At one point CF/N was upset and we had a fight. But we talked and I tried to explain to him what I was trying to figure out ... " "Figure what out? not thinking about me? Fine. I'm done soon enough. You can go back to ignoring me after that." you where upset. What does C/n think about himself? "No, I need to figure out how to tell you that I really like you, too. and that I can't stop thinking about you and us and that I don't want a girlfriend but I want you." He talked fast and took a deep breath as he was finished. we both just stood there. "Like me too. CF/N told you about what I told ... " "Yes," C/N goods. you wait. Don't know what to say so you concentrated on finishing the second tire. C/N waits. The bike is repaired. C/N takes it and put's it at his place. you clean the tools and put them back at there place. "Y/N, can we please talk about ..." You stand in the middle of the garage. " I don't know what I should say." "Okay, hmm so first I apologize for ignoring you and hurting your feelings. What can you say to that ?" "Thank you for apologizing. I'm sorry too, that I tried to ignore you. I did it because you hurt me and I wanted to hurt you back." your eyes filled with tears. You didn't cry over C/N, but now you did. " no no no. don't cry. please. Don't" C/N was freaking out. "I'm sorry. I don't know why." "Please smile. I can't just don't cry. I made you cry. You should never make a woman cry." you had to smile because he was so adorable when he was helped in a way. " Do you accept my apology too?" " Yes, I do. fully. ... as long as we can be friends again. Or more. I really wouldn't mind more. " C/N stood right in front of you. you looked down at his and your shoes " I would like more than friends too." You look up. He stares at you. you put your arms around his neck. and get on tiptoes. First, you just want to give him a hug. But you give him a kiss on the checks bevor hugging him. you feel his arms around your hips. as you pull away from him he asks. "as more than friends are we going on dates?" "If you ask me on one" you reply and he nods. W And as more than friends am I allowed to call you my girlfriend?" " Maybe later in time, not jet" you answer and he nods. " As more than friends but not my girlfriend, am I allowed to kiss you." you blush. And look up in his eyes. This time you just node. He kisses you. You have to cough. You get the water bottle from the self and drink something. C/N follows you. You lean against the shelf. He drinks some water too. Then he moves your chin upwards so you face him. And he kisses you again.

[suchawonderfullife]

5 months post treatment: given the all clear, back to work and future plans!

I haven’t updated for a while but I’ve got lots of positivity to share. I’ve attached the above photo because of the truth in it. I don’t mean it in a egotistical way, but for those who know my journey and how far I have come, I want that to inspire others to never give up on recovering their health. I truly believe our bodies have the amazing ability to heal themselves, just as mine has done. That doesn’t mean the way I recovered my health will work for you, but it’s about finding the right combination of things that your body needs to trigger that healing. 

I would also like to add the importance of not taking a doctors words or advice as gospel. My CFS Specialist (whom I hold in very high regard) told me that I would be lucky to reach 50% health and that would be as good as it’ll get for the rest of my life. Boy was he wrong. My Hansa dr and Osteo in Melbourne have opinions on treatments that I disagree with, so I do my own research and make up my own mind. You know your body better than anyone and in buddhism we are taught that “what you believe to be true, the opposite of that is also true, depending on time, place and circumstance.” 

Here is where I’m at: 

CURRENT LEVEL OF HEALTH/CURRENT TREATMENT I would say I’m at around 80% health now. Upon my first visit to Hansa almost 1 year ago, I would have said I was fluctuating between 40-60% health. My health is far more stable and consistent now too. I’m still on all my Hansa remedies and I could potentially be on them for another year. It’s really up to me how long I take them for. I feel worse on treatment because it is still doing stuff. On the days I don’t take treatment, I pretty much feel “normal.” Treatment can affect my mood and bring on depression, anxiety, anger, mood swings, along with physical symptoms such as nausea, fatigue, insomnia, organ pain and more. 

I received some really good news from my Hansa Dr the other day. I sent him an email, enquiring about coming back for a third round of treatment in November this year. He responded that due to my current level of health, it is not recommended that I return, unless I start going backwards. He said at 80% health there are things I can now do at home to bridge that gap, rather than travelling all that way for such extreme treatment. I honestly cried when I read this. It was confirmation as to how well I really was doing and that all my hard work has paid off. I have worked really bloody hard to get to this level of health. Treatment is not easy, but neither is being sick. I truly believe that I can heal my body by implementing other strategies on my own now too.  

Something amazing that happened 2 months ago, is that I was well enough to drive 8 hours to Canberra for my brother’s wedding. In the 9 years he’s lived there, I’ve never been well enough to visit him, not even to get on a plane. I drove the entire 8 hours by myself and spent a whole week surrounded by family, driving around, attending my brother’s wedding and then having to drive home. It was a massive achievement which boosted my confidence in knowing my body can now cope with something of that magnitude. 

MENTAL/EMOTIONAL HEALING Something I still need to work on is releasing anger from my body. I read a book that explains the way you react to current circumstances is an indication of the emotions trapped in your body. I react very easily to situations with anger. I’m angry a lot and I’m very aware of it. I will do some more EMDR sessions but I’m hoping to find another method to help release these emotions from my body as they serve me no purpose.

Healing your mind I believe is big part of helping your body heal. Before leaving for Hansa I made sure I changed my attitude towards illness. I wanted to do all I could to detach from having an illness as part of my identity. My fear was that I subconsciously attached to my illness and my brain would not want to let go of that “story.” I really think I’ve detached from that way of thinking. I no longer say “I have Lyme Disease” or “I’m being treated for Lyme.” Anything that associates an illness with part of who I am, I will do my best to not verbalise or think. I will say to people if it comes up “I’m having treatment.” If they ask what for I would say “Lyme Disease.” But that doesn’t attach it to my identity in the same was as saying “I have/I’m being treated for...” I don’t follow any Lyme groups on facebook. My dad was sending me emails about updates on Lyme research in America and I asked him to not do that anymore. I honestly don’t want to associate with it at this time because it serves no purpose to my recovery. I would much rather have the thoughts of feeling well and living a normal life than having a constant reminder of my past or something I am trying to heal from. 

Our brain is a huge contributor to whether we stay stick or get well. Dr Jernigan wrote an article about it. Our brain creates certain pathways of wiring that can either promote illness or heal it (that’s my understanding) and I do not want to feed those pathways or thought processes that hold onto any illness or poor function. That’s why I’ve become so mindful of my thinking and the words I speak. 

I have also removed toxic people from my life or I stay away from those I feel have a bad energy or do not serve a positive purpose in my life. I had friends who did not support my decision for treatment, who would ignore this huge part of my life and make it like the “elephant” in the room. When I’d bring this to their attention they would be dismissive or admit they don’t agree with my decision and the solution was to just not talk about. They’re not good friends. So I removed them from my life. Having these conversations wasn’t easy and I knew this conversation could break a friendship and end it. But I took that risk because I couldn’t live with the feeling their judgement or lack of support was giving me. It’s certainly hurtful when you care about these people, but letting go of things that no longer serve you is a part of life.  

Knowing your worth and removing or distancing yourself from people who do not contribute to your wellness is important to recovery. At times I even removed my partners (adult) children from my life, because their behaviour was detrimental to my recovery and I didn’t deserve to be made sicker by anybody, regardless of who they are. I even broke up with my partner twice at the beginning of our relationship because his actions made me sicker and he couldn’t understand that. As much as I love him, I will always love me more and put my health first. 

We can’t change people, so we have to set boundaries that put ourselves first. My health is the number 1 priority in my life, because without it, I have nothing. Anything or anybody that increases my suffering is not OK because I don’t deserve to suffer more than I already do (that’s the way I look at it). 

RETURNING TO WORK That’s right, I’m working now. It was a very scary thing to do and took a lot of courage. Even just writing up a resume and applying for jobs was scary. The last time I returned to work, I relapsed 9 months later and was the sickest I’d ever been. There’s always the fear of “what if I relapse/What if I can’t cope?” I had no idea how much I could cope with. Then there’s the fear of an employer not wanting to hire me if I can’t work less than 20 hours a week. 

I actually ended up with 2 jobs. One in hospitality at a function venue and one working from home as a content writer. In my hospitality job I found it hard at the start, carrying very large serving trays, on my feet for 8-10 hours a shift. My organs would ache and my muscles would be very sore the next day from using muscles I haven’t used in a very long time. My arms would be shaking with fatigue hours into carrying large serving platters and drink trays. But I proved to myself I could do it. In 1 week I worked 3 days straight, 22 hours total. My body recovered and I was ok after a day of rest afterwards. I’m still working on building up my strength when it comes to carrying large items for long extended periods. My muscles would have atrophied over the years I was bedridden and I’ve lost a lot of strength. But I’m proud of myself for pushing through my fears, trusting in my body and its abilities and not listening to the “what if’s”. 

The content writing job started off hard as well. A few hours of writing and I would be incredibly fatigued. But the more I’ve done, the easier it has become. I see my brain as a muscle and mental fatigue is simply because my brain is not used to thinking in the way it needs to, to do that job. The more I do it, the less I feel fatigued and drained. 

As I still have to do treatment and this makes me feel unwell. I feel I am now capable of working 15-20 hours in hospitality and 10 hours as a content writer per week. This is pretty huge, as a year ago I would have said I could work 5 hours one week and then not at all for 3 weeks and then maybe 5 hours again the week after that. Because my health was so inconsistent I thought: who would want to hire someone for one small shift a week, who would then need a week or 2 off inbetween in bad periods?

The bad experience I have had is that I got fired from my hospitality job. I was being bullied by one of the co-workers and when I brought this to the managers attention, she fired me (in a nutshell). This has triggered my depression and anxiety and significantly impacted my confidence. I’ve had to pick myself up and fight through all my negative feelings to look for a new job. The second I saw I was removed from the roster and had the intuitive feeling that I’d been fired, I went straight back to looking for work and applying for jobs. I’ve had 3 job trials and been offered a position in a venue similar to the one I was at. I’m still lacking confidence and feel anxious to work, which I never felt before this bullying and mismanagement experience. At my last job trial I dreaded going because I felt so shit about myself, I would rather stay at home and avoid any future rejection or bad treatment. We’ve got to push through these things though. I’m proud of myself for jumping straight into looking for more work and not letting my feelings dictate my actions. 

FUTURE PLANS Now that I don’t need to return to Hansa if my health continues to progress, what shall I do? I’m very excited for my future. I certainly fear relapse but I think that if I keep doing right by my body, it should all work out. I will keep taking all my Hansa remedies for the foreseeable future. I believe diet will be a huge contributing factor to my recovery. I have started getting into fasting and incorporating a more plant-based diet. I follow Tyler Tolman and his philosophies on healing the body through diet and fasting. I watched many documentaries on the food industry and the Western Diet which opened my eyes on how to eat better to nourish my body. I hardly ever consume red meat, I limit my dairy and gluten intake, I cook vegan 3-4x per week, vegetarian 1-2x per week and other nights I eat chicken, pork or fish with a large array of vegetables. That’s just what I believe, I’m not saying it’s right for everyone and I’m doing the best I can with the knowledge I currently have. We can always continue to learn and better ourselves, which I will certainly do. 

I have found local practitioners I can utilize to further my healing. A kinesiologist/naturopath that comes highly recommended from a friend who had Lyme and she helped bring him into remission, a neuro trainer who can (potentially) help reprogram the wiring in my brain, my EMDR practitioner and I’d like to try acupuncture and yoga. I want to get out in nature more, do more work on myself spiritually and like I said earlier, find some way to work on releasing my anger. 

I’m naturally an impatient person and these things cost money and require time and energy, so it’s not something I can just jump right into. I’ve started planning how to get these aspects of healing integrated into my recovery and that’s a good first step. I’m doing the best I can with my current treatment and trying to be kind to myself when I have a bad day, don’t eat the right thing or worry I’m not doing enough. I’ve come a very long way and I’m proud of how hard I’ve worked to get to this point. Many people in my life have only known me as a “sick” person. My family and less than a handful of friends knew me before I became ill, so I’m happy that people in my life will finally see the real me. 

I’m also ecstatic to prove all those who didn’t support or agree with my decision, WRONG. They can suck it and I get the last laugh :)