My lupus journey

The pain machine

Pain is a lonely place. . . I know. I’ve been there and back. People could only see the tears roll down my face and me clenching my fists while writhing in absolute agony.

Sleepless nights, endless painkillers, morphine, ketamine, the pain machine, fentanyl lollipops nothing would ever remove the pain completely.

The pain machine also known as a syringe driver was with me all the time giving me a steady dose of diamorphine. Entenox was something I’d become physically and psychologically addicted to. While sucking on the mouthpiece I’d watch the needle on the dial go from the green zone to red over a period of 12 hours, sometimes less. My heart would sink. If I dozed off then it would last me through the night. This is not those small cylinders that you get in the back of an ambulance. I’m talking about the big ones which are brought on a wheelie by a big and strong porter!

Eventually one day the doctor who saw me for the whole time I was on the gastroenterology ward casually came into my room explained to me that I was to stop taking the entenox due to it having affected my bones and the obvious answer from me was no! He took it away anyway and I broke down, started shouting profanities and thought I was going to die without it. I believed that was the only thing that was giving me relief from the pain and he’d taken it away from me. I wanted it back so bad. I became verbally abusive, bad-tempered and uncooperative when the staff came to help me as I was bed bound and unable to walk, they had to turn me in bed about 2-3 times a day plus help with everything else that you can imagine.

At that time the pain was meant to be. So without the Will of Allāh, there was nothing any human or I could do that would get rid of the excruciatingly disabling pain. At that time I just wanted to die.

Now I know no matter how hard times get a mu’min should never wish death upon themselves. Here I am today as I look back at that time that I fought through only by the permission of Allāh to see better days. Days that I apply the lessons learned. Not to sound big headed, I may have even mentioned this before, I don’t need to look far, I see myself as an inspiration for living through each day and night confined to a hospital bed, unable to do anything for myself for a whole 10 months. Just try and imagine that. Do you think you would be able to have the patience and willpower?

No!

I didn’t either but I made it through. SubhānAllāh

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My lupus journey

Rituximab

Rituximab infusion | Cycle 2 dose 2 | 23.08.2018

Two weeks after my first dose of cycle 2, on the 23rd of August I went into hospital at 9:00am for the 2nd dose of cycle 2 of my rituximab infusion. Routine checks such as a doctor consultation, blood pressure and temperature checks were made. And I was feeling well enough to receive the medication so we went ahead with it. The first task was the most tricky one (not for me but for the nurses!) It was the task of getting a cannula in my near to non-existent veins! The second attempt was a success in the back of my hand.

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My lupus journey

Rituximab

Rituximab infusion | Cycle 2 dose 1 | 07.08.2018

The last time I had rituximab was in 2015; it really helped ease my symptoms but I haven’t really needed it until now, 3 years later. Recently I have developed the butterfly rash on my face, my joints and muscles are in pain occasionally and I’m loosing my hair in bunches. Last month I went to an outpatient appointment to see my rheumatologist who’d suggested I have another cycle of rituximab due to my lupus flaring up again.

I’m not one to accept whatever the doctors throw my way (I know better from previous experiences), I like to do my own research before agreeing especially with previous mistakes which I have to live with till this day. I like to take as little medication as possible, that’s why I was eager to come off my steroids but that didn’t work due to me having a flare up again. I’d had rituximab before and I’d done a lot of research on it plus I was fine with it so I agreed to have it again.

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My lupus journey

Kidney biopsy

On the 24th of March 2014, I received a phone call whilst at work to go to the hospital so they could carry out a kidney biopsy. I was called by my regular rheumatologist who explained I had been putting it off for too long now and my last set of bloods showed that my kidney function had declined by 30-40%. I was having regular blood tests done because I was taking mycophenolate to keep my symptoms under control which is an immunosuppressant. People who take immunosuppressant drugs need to have their bloods done regularly and monitored.

The kidney biopsy went ahead on the 25th March 2014; overnight I had a blood transfusion of two bottles. I had the kidney biopsy around after lunchtime; they wheeled me away into the procedure room on my bed when my dad had left after paying me a short visit.

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My lupus journey

Hydrotherapy

This type of therapy is carried out underwater to strengthen the muscles or joints. It puts lesser pressures on the joints as opposed to when the exercises are done on land. Hydrotherapy has the following benefits:

  1. Reduces muscle tension and relieves pain
  2. Boosts the immune system
  3. Relieves stress
  4. Rehabilitates injured muscles

I’ve had physiotherapy sessions previously but on Wednesday it was my first time in the pool for a hydrotherapy session. I’ve had three major abdominal surgeries; two laparotomies and one laparoscopic procedure so as you can imagine my core muscles are very weak. In addition to many other issues I’ve also been diagnosed with something called sensory neuropathy so in terms of my balance, I was all over the place the handrail and the floats were a massive help. Alhamdulilah.

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My lupus journey

What is inside my pink rucksack?

When I was given an option of which colour rucksack I wanted, obviously I chose the pink coloured one over the navy blue and black colours. I also asked for some wheels with it.

Inside the rucksack, I was to place something called a Total Parenteral Nutrition (TPN) bag and my Micrel Mini Rythmic™ PN+ pump. I was put on this after I spent 3 months in hospital post-surgery suffering from high-output which was depleting me of vital electrolytes from my system. TPN was replacing them just about at that time along with additional IVs of magnesium and potassium. I was constantly eating. The reason behind this was that I had a newly re-fashioned (yes, this is a medical term) ileostomy after an emergency admission which was literally pouring like a tap!

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My lupus journey

The Intensive Care Unit

At the start of those excruciatingly painful 10 months when I was in the hospital in 2014. While on the renal ward where I had initially been admitted to under the care of my rheumatologist, my dad had come to visit me like usual during the afternoon visiting hours and we went to sit in the day room.

We were just casually sitting, watching the TV while I was reading something on my phone in my hand. Then suddenly for no apparent reason, I started to have a seizure. My hands started shaking and I fell to the side. My dad, who’d never seen anything like this happen to me before, was extremely worried and panicked so he quickly got one of the nurses and she pulled the red emergency triangle and all the rest of the nurses came rushing. Everyone was ushered out of the day room including my dad and I was rushed to the Intensive Care Unit (ICU).

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