I had starting to feel stressed because of an extremely stressful situation. This time however I approached it differently. I have to take this time to say that I really did make a valiant attempt at taking a back seat. It was not easy at all ass this was something I would have been first and foremost in getting things sorted. Like I normally did. Cutting myself off and having as little interaction with the sitiuation as possible. I was actually living by and sticking to what I promised this year. #mefirst!
I’m really proud of myself. Hell I’m proud of myself for saying I’m proud of myself! I still have the training wheels on but I’m learning to pedal through this thing new thing called a #mefirst life. My mom was telling me that my 2 year old niece Gigi got a new bike. She taught herself to ride that bike. She wanted to teach herself. (SO ME) She threw it down and got angry and frustrated multiple times until she got it. Now she is a speed demon and the bike goes everywhere. I love that about her. So many of us can learn from this sassy two year old. Get pissed off and start again. Admittedly, easier said than done. Now she is pestering the neighbours with “Hello I’m Gigi! Wanna see me ride my bike?” I want to facepalm but once again, she is proud of her achievement and she is sharing it. Another thing we can learn from little Miss Sassy a.k.a Gigi
So on Saturday the flare kicked the door open. KICKED! Made one helluva entrance. “Are you friggin serious? I just had the damn infusions yesterday for Lupus and now my fibromyalgia wants to flare up? “No way!”. I said incredulously. Because no. Just no. I spent the next few days having to get out of bed early because I was in so much pain. My neck and shoulders had such spasmed so much it was rock hard. None of the options I had to relieve the spasms worked.
For the rest of the day I would use alternative medication. I have a tincture that does absolutely amazing things for my muscle spasms. I didn’t have alot left so I used it like gold. Once I get the go ahead I will let you know about this because it has made a real difference in my pain. Even my physiotherapist asked for the details for her other patients. This is one way of not taking exceeding amounts of chemicals and perhaps even overdosing because I’ve lost track of how much I’ve taken out of sheer desperation. For now, a sort of balance.
Everyday I had to contend with pain that could not be quelled. I’d get a couple of much needed amounts of hours a day, sometimes just one, but still, I got relief from the constant nagging pain. No. Nagging is incorrect, its actually shouting. Like someone standing up close screaming at you. Constantly. For a while it shuts up and during this time I made sure I got as much done in this window as possible. Including my blog because it brings some normalcy and is cathartic for me. So I blog a little and save along the way.
I was so excited about getting an emergency appointment with the Pain Management Clinic on Thursday. Who gets excited about that? Me! I was suffering with raging pain. I was trying to self-medicate to no avail. I mean I was reaaaally trying everything. It just kept getting worse. I went into the clinic on Thursday. We spoke about the neck epidural that needed to be done. However, we first needed to stabalise the pain. Professor Frohlich (Frohlich means Happy in German. I did German for about 5 years in high school) advised that we should the steroid injections as it had been a while. She did say that the price had increased to do the steroid injections and warned me about the cost. Each injection costed approximately R700 (rand or $46.65 each) and depending on how bad my neck was we would see from there. She worked strictly on a cash only basis. Even her in hospital procedures with massive price tags had to be paid in cash.
I was embarrassed. I said to her “I’m on disability now and can probably only afford two injections this time” Perhaps I could come back in a few weeks if I could raise the funds for more. She did the most amazing thing. Another reason why you need a good medical team that you have a relationship with. She said “how about I charge you for two but do four to six injections based on how bad your situation is.” Maybe it was because I was visibly in pain? Anyhow, I was floored. I was thankful. I went to the procedure area to get the injections. Readied myself in the chair for what was to come. When she touched my neck and shoulders she said “this is really bad.” She ended up having to do more than ten injections. Man, I held on tight. Bit my lip and mentally took myself away. These injections are pretty painful. The burning from the steroids coupled with the fact that they are being stabbed into muscles that are rock hard? You literally leave there shook. Feeling a bit traumatised. However, it was not over. Unfortunately she doesn’t keep strong medication vials for injections or I.V bags. She then referred me to E.R to get the much needed and the super strong meds to break the pain. Ugh. I couldn’t avoid E.R anymore.
You see, I had not wanted to have to go to hospital, go onto I.V’s or go to the E.R. Being admitted to hospital for infusions last week meant that I hit two out of the three. I was adamant I was not going to go to E.R. So when the pain hit on Saturday I could have gone to E.R but I was not going to let the unholy trinity manifest during the FIRST month of the year! NO! I really refused to let my year start with all this crap but here we are. So as per Professor Frohlich I went to E.R. Begrudgingly, disappointed and with a heavy heart, hubs took me to E.R. He opened my file and they did my assessment. You see we know this procedure well, too well. I told hubby to go home because I knew I would be there for a while and this wasn’t my first rodeo so it was pointless for him to stay. I’d call when I was done to let him know to pick me up.
I hate the assessment. I’m in extreme pain and I can hardly function let alone think properly. So there are all these questions and I’m always just “Oh GOD! This feels like you’re just buying extra time for yourselves, so it FEELS like you’re doing something.” Trying to think of all my medication, operations, family history etc is awful when all you want is someone to stab you in the forehead with an axe to make the pain stop. I always wonder if they e.g make someone who was bitten in the face by a dog; had a possible heart attack also had to through all these questions?!
Also because I have Lupus they always do a full blood work up and ECG to rule out anything Lupus related. Still, here I am waiting to get them kill the pain. Noise makes the pain so much worse and all the chattering in the E.R area was driving me nuts. The nurse was kind enough to get me on the I.V a.s.a.p with a general painkiller. The doctor finally saw me. He came and looked at me and said “I heard we are here for an amputation?” Poor young doctor coming with Dad jokes to try and make me feel better. I looked at him and said “Yes. My head. Remove the whole damn thing”. At this point I was curled up in a ball, holding my head and rubbing my neck and head in a dark room like the real weirdo I am. Hey when pain like this comes everything goes out of the window. I can’t even fake that I’m in pain. Too much hard work when I’m on this level of pain. Shame, decorum, manners. All of it. Being nice and sweet. Poof. Pain takes the drivers seat.
He could see my pain. He prescribed one helluva dose of morphine. It had me in and out of consciousness. The I.V with the medium dose painkiller was running as well. I kept going in and out of consciousness. I have no doubt that I snored though. My hubs always tells me about my snoring. Yes, even in previous E.R visits. I will note that I wasn’t a complete, complete mess though. My pillow wasn’t wet! This mean’t I hadn’t drooled! It’s a win and this year I’m celebrating small wins, like not drooling while I slept!! I had an ECG done and everything was all good. Nothing extreme came out of my blood tests so it looked like it was what we thought, an extreme pain flare. Win! Meanwhile I was flying really high from all the meds! The doctor suggested that I go back to the Pain Management Clinic and look at stronger patches etc.
I took the script he gave me and thought that he had given me patches for my muscles because he told me they were ridiculously tight. The pharmacist warned me that it might make me drowsy. In fact it probably would because it was so strong. In my mind I’m going “yeah right.” A muscle patch. The pain did not break. I woke up yesterday still feeling so ill. How was this possible. This was going to mean being hospitalised for pain management. I rememembered the patch and took it out to put on my tight muscles . I thought to myself “this is kinda small compared to the others you get but oh well”. Took it out and turns out it was a Fentanyl patch. As previously mentioned in other posts, I didn’t even know we had Fentanyl in South Africa! I only knew about it because of the situation in America.
It has reduced the pain to more of a dull pain, so it is helping but I probably need a higher dose. One of the side effects of having to take meds for serious pain for 13 years. Despite the 10+ steroid injections my muslces in my neck and shoulders are still in such bad spasm. I constantly have my microwave heated, wheat bag on my neck to try and soften my muscles. Epsom salt soaks. I’m seriously walking around like a drunk toddler with all this medication. It’s difficult to do anything because I fall around from the medication. Yoga is pointless because my balance is a joke. I am staying away from dangerous situations like cooking on a gas stove. I will burn down a whole suburb with where I am at right now.
This week really tested me. I cannot express the level of pain I am in. It’s the excruciating, unfathomable, unrelenting pain that has brought me to my knees. Literally. I’ve shed so many tears because I have tried everthing possible. I’ve been over-medicated so many times this week but it was the only thing I could do. The worst part was I could not even sleep during the day to have a little break from the pain. It’s the kind of flare where you literally picture stabbing yourself in the head because you mind goes wild with thoughts of getting relief. Yes, you even think of suicide. You just want to give up fighting. You body physically and mentally cannot take anymore pain. You are drained. You feel so broken and you just want some reprieve and believe me death looks really good when pain gets to this level. Your body is just so traumatised. I have the shakes and terrible tremors.
So yes, I wrote some blogs. I felt that maybe it will take my mind off of my what was happening in my daily life. I was doing the toxic positivity thing again.( Watch out for a future blog on this scale soon) I did take a bit of a break. I love my readers. You guys keep me going. You keep me inspired to continue writing and sharing the stories about my challenges and wins. If I didn’t have this sense of accountability to my readers I could just go to ground and completely isolate myself like before. It used to be so unhealthy for me. It allowed me to wallow in depression. I never want to be in that space again. It’s okay to be depressed but being in it long term is awful and it takes so much more to get out of it. I’ve learned to notice the signs and start turning things around before I fall into another abyss.
So for now the pain continues. The Fentanyl patch only works for 72 hours. I will assess the pain level after that. I had to update the Pain Clinic after the E.R visit so they are very accommodating about giving me another appointment next week. I need some strong meds for a at least a week. I cannot explain what constant pain does to you. My body is shaking, I have tremors and I am so incredibly weak. I am sad and frustrated. Nothing I planned this week happened except for doing a proposal for a project that I am really excited about. It was on my heart to at least get this one thing done and I did! It was damn hard but I worked on it little by little and kept it as simple as possible. #smallwins !
I cannot stand another week like I had last week. As I said it brought me to my knees. I cried. Alot. Funny that, it actually helps with the pain. I always say that a good cry is like washing your soul. Well, damn. I’ve been power, pressure hosing my soul this week! I felt really sorry for myself because I tried to do things like cooking ( I really want to have some recipes I can share that are super easy for people who are chronically ill. Leave a like or comment if it’s something you would interested in seeing.) and was barely able to until I got to the point that right now I can’t. Totally disabled right now and I wish it wasn’t so. I’m like a drunk baby… In yoga they have a happy baby pose. I just brought in something new. You try all the poses and fall over in a spectacular fashion and boop! You just did a drunken baby yoga move! Look at you being creative!!!
I had downloaded planners to keep up with all the things I wanted and needed to do for the week. In swoops Lupus, closely followed by Fibromyalgia. Just taking over as usual. Such a totally unmannerly disease. Just being their rude selves as usual. No regard for what I was doing or what I needed to do. This is one of the reasons I am on disability. I would probably have to had taken at least two weeks off to deal with this disease because come Monday if it hasn’t improved significantly then I will have to go into hospital for pain management. The last time I did that it was basically for five days! Ermmm thats a HARD NO from me!!
So since Saturday I think I hid reality pretty well until I could no more. I’m too tired and traumatised to pretend. Yes, trauma. The constant traumatic pain mentally and physically all day, 24/7. No reprieve. You wake up because you’re in pain and need to get up and get a rotation of some serious medication going. You go to bed after taking a handful meds and being in pain. All of your time is taken up by trying to get some pain relief. Just a little. Is that too much to ask?
The things that run through your head while you lay there in bed unable to sleep. It starts getting really messed up. It’s hard to try and think positive things at this point. It’s hard to even do Yoga which is also my way to do meditation. So right now my world is turned upside turn. I’m in an awful space but I’m trying my best to keep it together. Easier said than done for sure.
I’m going to keep trying. I have no choice. I need to get better. I am going to work on getting to a better mental space. Let’s see what happens with the pain.
Please send prayers, love, positive vibes, duahs or wjatever your belief system is. I need it all. I need you all. I’m learning to ask for help and I really do need your help to get through this really hard time.
I just want to be better. I’m tired. So tired. I’m just going to focus on my blogging because it makes me happy. It does take alot out of me and I do it in stages but for that time I’m doing something I love. I have so many posts waiting to be written. I’m excited about it because for that time I’m immersed in something that gives my mind a break from all the worry and stress of my reality.
Hope you’re all having an amazing weekend! Enjoy every moment of it! CARPE DIEM!
ONE LOVE ✌