I’m Struggling. I’m Lost.

Frustration, anger, sadness, anxiety, grief, a sense of being lost. These are just some of the feelings I am feeling right now. The best way I know how to deal with it, is to write about it. I apologise ahead of time if this upsets any of you.

I need to figure out my “new normal” but things keep changing. In South Africa we have levels. Level 5 being full on lockdown. We are now on Level 3. The rules and regulations and made and changed willy nilly.

There is a big outcry in South Africa. Why did we ban cigarettes? No other country has done this. I have my theories. BATSA, the tobacco company has taken this to court. It’s already been found that the crazy, power drunk, hag of a woman Minister lied to the country about the numbers she got in a petition to ban smokes. She is trying to prove a point. She is the boss. So obviously people are buying on the black market. You can’t expect 11 million smokers to just go cold turkey, adding to the mental stress. You’ve made good citizens, criminals with this stupid law of yours. This does not help with the feeling of anxiety and uncertainty. Clearly the politicians lie. We know this, but why was she not taken to task for lying to the whole country? The politics have been driving me crazy, so I’ve taken time away from the news, for a little while. My frustration is through the roof with this.

I seem to feel hopeless and lost. In the beginning I had it together, I really did. Then I started feeling unwell. I’ve been sick for almost four weeks now. I’m waiting to get an appointment with rheumatologist because I cannot continue like this. I’m couch ridden. At the same time, it can be because of Lupus. You feel like you have an ugly flu and this feeling can go on for weeks or even months. Here is a site, that will give you more info on this. 14 Lupus Symptoms you should never ignore

Imagine having the flu for four weeks. I actually had a blackout on Friday, while attempting to cook, on a gas stove! I know the drill because I suffer from synoscopes which is basically having blackouts, fainting, collapsing. This is normal for me. In the article you will read that these cycles of being ill happen. It seems like it’s my turn.

Pain. SO much pain. I am under the care of a pain clinic because they can prescribe meds other doctors can’t but more importantly, they do procedures. I visited the pain clinic because my pain was so extreme. The Professor said that unfortunately she can’t do any procedures right now, because they are done in theatre. All they can do is keep me comfortable.

So, she doubled my oxycodone and Lyrica/preglabin (anyone else on this?). She did the steroid injections in my neck. 10. I did not flinch. She says I’m one her best patients because those injections are so sore, but I don’t flinch but also because I’m used high levels of pain daily.  I told her it’s because I want them because they provide some relief. I will put myself and have put myself through many painful procedures but because I know it’s going to give me relief, I’m excited about getting the treatment.

They sometimes do facet infiltration where I lay on the x-ray bed, hooked up to a monitor. They do the injections in between the vertebrae so they need to be precise because they could hit a nerve or something. This is also why it’s done while you are awake, so you can scream when they hit a nerve. Holy shite is that sore! You inadvertently shout! You feel like just jumping up and running out. I swear those long needles… you can feel and hear the scraping as the needle goes in. To keep me completely still in a weird position the doctor needs me to be, they get a big nurse to LAY ON ME! I kid you not! This is so that I don’t move and mess up what the doc is doing. They do multiple injections. Man, I come out of there feeling fragile with a bleeding neck! I once fainted afterwards. FACEPALM!

Finally got hold of my physiotherapist, who treated me from the age of 27 for the osteoarthritis in my neck and she was with me as I was diagnosed with Fibromyalgia and Lupus. She is amazing. She is actually a Doctor in physiotherapy. She has the most amazing gadgets. I’ve spoken about this before in other posts. She did lymph drainage for me in a space suit! So much better than the very sore normal way. It did help because I take so much hectic meds that can cause toxicity in my body. I’ve had this before. If you are chronically ill and take lots of meds have a look at lymph drainage. It helps you get rid of toxins.

Let me tell you I get so excited to go I even wash my hair! It’s an outing! She was working on me and she said “I’ve always admired your ability to handle pain. I just put 23 needles in you and moved them around in the knots and you did not flinch at all. Do you know how hard it is for me with other patients? You make this a breeze.”

Seeing her has really helped but it only lasts for so long and then I have to go back. Before all of this I used to go for physiotherapy twice a week because that’s the level of pain I’m dealing with, with fibromyalgia.

I’m grieving. I’m grieving a surreal event. My Grandad’s death brought about so many emotions. I also realised I no longer have any grandparents. In my life Grandparents are important. With all three of my other grandparents I got to fly down often to spend time with them while they were dying. I didn’t get this with him. I didn’t touch him. It doesn’t feel real. You know after funerals; people stay for tea and cake and you get to console each other and reminisce etc. I didn’t get this. The funeral zoom call ended and that was it. The end.  I was left in a weird space. There is a new normal for death and grieving that I have to figure out. I think it’s time to see my psychologist because I am truly lost, and I need perspective.

 I’m tired of living a Groundhog Day life. As the infections increase, so does the risk increase for me. So, I’m so weary of the thought of living like this till October or whenever this is under control in South Africa. Yes, you can find ways to entertain yourself BUT I am sick. I’m too sick to get off the couch, let alone get on a treadmill or even cook. I’m in too much pain to do anything either. Our domestic worker is back now because I can’t do any cleaning. It’s been 4 weeks of this and I’m emotionally and physically drained.

I feel world weary. You have no idea how emotionally and physically drained I am. The more I try to get the new normal right, things change and being sick, I just can’t keep up. I wish I had a little bit of energy. Just a little every day. Give me 1 hour of not feeling sick, not being in pain, not being completely fatigued and drained. Hell, I would take 10 minutes! I’m known for keeping it together when I’m sick, but when I say I want to tap out, you know it’s serious. When I can no longer even fake smiling and being ok, things are bad. It’s like straddling this abyss. I’m walking around in a desert, lost. I’m trying to make sense of the world and find some peace, contentment. I do not feel okay when I don’t know or understand the situation I’m in. Control freak in me sounds the alarm for anxiety. Depression even.

Everyday. I’m a shell of myself. I feel like I’ve lost who I am. I’m just this person stuck in a permanent Groundhog Day, straddling the abyss and trying to keep it together. I’ve learned that it’s okay to not be okay. It’s a hard concept for me but I’ve slowly integrated this into my life. Right, now? I’m not okay.

Stay Safe.


9 thoughts on “I’m Struggling. I’m Lost.

  1. You know you got a retreat right here by me. I’ll look after you, cook for you and ferry to and from medical appointments. Got the best doctor in Oz on standby for the day you come visit. Just say the word Neshama and we will be ready for ya.
    By the way, never apologise for being human, we all break some time or other, we need to break so that we can work on ourselves. You Neshama are a beautiful soul, a spirited soul and when you hurt, I hurt.
    Love ya big big!

    Liked by 1 person

    1. You have no idea how I want that. Just to be able to plop myself on your couch and this time I will defo say yes to you catering to me 😁 love ya muchness💕💕💕


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