For months I was excited to attend the nuptials of a dear friend. In the months building up to the wedding I had some health setbacks. I promised him that we would be there for the wedding. I would drag myself there if I had to. We were so excited to be a part of their big day. The little health issues of viruses etc was not going to keep me away… and then lupus came out in full force.
As you know I spent 9 days in hospital and it really took a toll on me. It wiped me out. It also then caused a massive fibromyalgia flare leaving me in excruciating pain. I came out of hospital a week before the wedding. I thought that I would rest alot and make sure I would be able to make the wedding. Alas it was not meant to be…
I hate dissapointing people. I really hate it. I pride myself on sticking to my promises. Lupus and fibromyalgia changed this for me. The wedding invitation had come out months before and I had committed to it. Who knew I would become so ill two weeks before the wedding! This, sadly has become the story of my life. So many missed invitations and meet ups.
For a while I became really depressed about it and avoided social events. It was easier to say no than to say yes and dissapoint people. I could be absolutely fine and the day of, I could wake up unable to get up and then have to cancel. Some people were understanding but others not so much. It’s an invisible disease so since I don’t look sick some people thought it was b.s. This became another aspect of my life I had to find a way to navigate through. There was no handbook and I would just have to figure it out on my own.
It did teach me who loved me and understood me. Who had compassion for this crap I was trying to deal with and were patient with me. These were the friends and family who knew my heart. Who knew that I so much wanted to be a part of these social gatherings and that I was bummed that I couldn’t be. I appreciate you all for having patience, understanding and compassion.
Making plans was causing me extreme anxiety because I didn’t want to flake. Over the years my circle have made it so much easier for me. The anxiety is still there, although not as much, because now I don’t want to let down anyone in my circle. I don’t think it will ever go away entirely. I dissapear for days and my circle knows that when I go quiet I am not well. I don’t even have to tell them anymore. We have an understanding. They know I will resurface.
I’ve found ways to try and cope with this over the years. When I visit Cape Town there are so many people I want to see. At first I tried to take on this gargantuan task of trying to visit everyone in the short space of time because I didn’t want to offend them. I did this at the price of my own health. I would end up over tired, exhausted and in pain. In some instances it brought on flares because it was getting to me physically and emotionally. I just could not do this anymore. Irfaan and my close circle gave me a talking to. Cape Town was not fun. It caused me anxiety and I even sometimes cried on my flight to Cape Town knowing how overwhelmed I would be. I couldn’t change people but I could change my own behaviour.
The easiest way to do this was to get family/friends together at the same time. Having a BBQ, lunch or just hanging out but doing it with groups of people. This took some pressure off of me because I could see more people and also get to have great get togethers. Turned out really well actually. Some were like mini reunions. People who didn’t understand this and felt that they were far too superior for this and we should be visiting every day or carving out hours just for them…well sorry not sorry. If you really cared you would understand.
As it is now we have a formula that works for us. One that makes me not dread coming to Cape Town. I also thought that if you wanted to really see me you could visit me? If I was in pain or sickly why not pop over to me instead of bitching about me not visiting you. Some days I just need to rest and recharge. Some days I would like to do some sightseeing rather than visiting people because its the right thing to do. I spent money on these tickets. Surely I am allowed to go off with Irfaan and just go spend some time time together and do some touristy stuff. Let it feel like somewhat of a vacation rather than a chore of revolving doors. Get away from the city and just going to enjoy Cape Town, go on a drive or out to eat.
To those of you who are happy to get to see me and spend some time with me no matter the circumstances, I love you. Thank you for showing me love and understanding. The whole spending time with people who don’t really care and we are doing it just because I have to… my contact is kept to a minimum. Strict instructions from Irfaan. Save your energy for the people you want to spend time with. Don’t put yourself in situations that is not going to bring you joy. In fact after some of these situations/events I am left down, agitated/upset. Who the hell needs that on holiday! I’m a strong believer of “bitch don’t kill my vibe!” I am too old to spend my time with buzzkills. You bet your ass I am going avoid being around you at all costs!
For those of you in my circle, I know you understand but please always remember that I never want to dissapoint you. Especially you. My social life is a play it by ear type thing for the most part. There are so many events, gatherings or just hook ups that I miss out on. It’s still pretty shit but I’ve come to terms with my restrictions. Some what.
As I have had to change and evolve in this area of my life I truly from the bottom of my heart love the fact that my circle not only understands but are so accommodating! To me! I feel honoured that you are part of my journey. I have lost people a long the way. There have been people who scoffed and tried to downplay my condition with things like “ag it’s just stress I don’t understand why she can’t just pop in for an hour” or “I saw her yesterday and she was fine” I can be fine when I wake up and by lunchtime be ill, in bed, unable to get up. This also tells me you haven’t bothered to go and learn about my condition yet you expect me to give of my precious ernergy… er that’s a massive, big, fat NO from me!
It’s a week after the wedding and I’ve just been reflecting on this. I had what I wanted to wear. We had looked forward to this for months but it didn’t happen because of my dumbass body doing dumbass things. I’ve learned another lesson. I’m always learning. Its such complex conditions that it will be a continuous learning experience.
So what have I learned? Don’t make promises when it comes to social events. My integrity is important to me. My word. This just proves how much you can plan ahead… Lupus and fibromyalgia can come and scupper your plans very quickly. I hate the feeling of not being able to keep my promise. I’m pretty hard on myself.
I guess the bottom line is my promises will be in areas I have control of. Social event no matter how far ahead it’s planned, I cannot make promises about. My word is my bond.
So our dear friend Kwaledi I apologise for breaking my promise to you and Mpho. I promise to make this up to you. I sincerely hope you forgive me! I promise my friend I will make it up to you and Mpho!
Also just because I have these conditions doesn’t mean I’m bedridden. Just because I am on disability doesn’t mean I sit in a wheelchair stuck in the house. There are times where my lupus is behaving consistently and my pain is moderate. I can still go out and do stuff! I am still alive. Yes, I’m a bit fragile but I’m not dead. I can go do things like travel if my rheumatologist gives me the o.k. I’m not going to go skiing, I can do things within my parameters. I can’t go and tan on a beach either. Right now my rheumatologist wouldn’t sign off on overseas travel but he would be okay with local travel. I would have to use the assisted passenger service. I love writing but I can’t. So using voice to text is a way to get around that. I still want to be part of the world and do things I love. It’s just needing to come up with ways around it.
People who love you will take the time to understand your restrictions. Find ways to make dealing with social events that works for your level of health. Do not feel guilty! You are not boring or a buzz kill! You just have medical conditions that have no regard for your social life! No sense of social etiquette. It’s rude and unmannerly. So you just have to learn to navigate the social maze as best you can!