I still find it hard to comprehend such rapid changes in health, a day, an hour even a minute can make in this mind boggling world of chronic illness. Its like an endless rollercoaster with dips you don’t forsee, your capabilities change with the ebb and flow of your symptoms. Chronic illness isn’t static, one day you could be thanking the gods for a reduced symptom day thats enabled you to go for a walk, eat a biscuit, listen to music, go on an outing and the next you are in hospital seriously ill. You don’t know how long either of those situations will last for and when they will arise again.
It is just shy of two months since my last blog post, ironically my next piece I planned to write was titled “consistently inconsistent’ which pretty much sums up the last two months. It has been such an unsettling time, I have not felt physically able to sit down to write and needed some time out. In truth I am still struggling enormously however I started my blog for a reason and that is to show the good, the bad, the ugly, the embarrassing and the difficulties people with chronic illness face.
It feels like an enormous task to try and relay and truly depict what its like living with chronic illness. I soon hope to write some descriptive pieces giving a true insight into day to day living as well as write about some topics I am itching to discuss. My next few blogs will be dedicated to what has only felt/feels like a living hell the last few months.
*I will do a series of shorter blogs over the next week or so*
Towards the end of my last blog (June) I mentioned I was heading the following week to see my orthoptist and for my iron infusion. Sadly no update on the eye situation as I wasn’t well enough to make my appointment and 7 weeks down the line we are still waiting to be allocated another. I did however make my iron infusion which on the whole went quite smoothly.
My lovely Mum and I arrived early to the hospital and were taken into the allocated room, it was a narrow little room with around 5 reclining chairs, some patients were already hooked up to various infusions/medications. Once we ran through the obligatory paper work the nurse attempted to put an IV in my thin spaghetti veins which were not for playing ball. She explained they like to put it lower in the arm or wrist where you are less likely to bend as if the iron leaks it permanently stains your skin. After a good few stabs (literally) it was in and she hooked me up to the iron which resembled treacle toffee.
Initially a test dose was given slowly over 45 minutes to see if any reactions occurred. During this time the nurses monitored my heart rate and blood pressure regularly and asked how I was feeling. Apart from being in need of a cuppa I felt okay. After the test dose the pump was started at a slow rate. The nurses continued to come round to do observations and I must say they were lovely and very thorough. My blood pressure started to drop which they were a little concerned about however I explained it isn’t all that unusual for me so I wasn’t too concerned. Mother hen was chief “brew fetcher” and entertainer. We did have a few giggles regarding the reclining chair, I don’t know if it was faulty or my ineptitude in trying to manoevere it but throughout the day I nearly ended up being flipped through the ceiling!!
As no reactions had occurred and I was feeling no more unwell than normal the nurse increased the speed of the pump around the two hour mark but said its still very slow and it’ll look like the bags not really emptying. Note to anyone going for an infusion- do NOT sit and watch the slow drip of the iron its like watching paint dry!! I attempted to watch a film on my iPad but couldn’t get comfy with my head/neck and constantly needed to pee from all the water to help my POTS, which involved unhooking the whole shebang and dragging the infusion stand which was like a supermarket trolly with a mind of its own across the corridor to another room.
Another hour passed and the iron didn’t even look like it was going down in the bag. After more observations were taken I was good to go full speed ahead on the fastest setting, the nurse said I would now see a big difference in the speed it went in. She was not wrong the bag was going down at a much faster rate and so was I….. nausea kicked in with a vengeance, I felt cold, headaches and generally wishy washy. On the plus side I only had a few more hours to go and my medication worked a treat in bringing the nausea down to a more manageable level enabling me most importantly to partake in an afternoon cuppa. I know cuppas are a running theme here, you just can’t beat a good brew, I think its the Irish in me !!
I met a lovely girl who arrived towards the last hour of my infusion who had POTS and was in for saline infusions to help manage her POTS. It was nice chatting to her and sharing similar experiences of how POTS effects us and hearing how her symptoms have improved with the x2 weekly infusions that sadly she had to fight tooth and nail for.
Once my infusion had finished I had to stay a further hour to be monitored, by this time I was very much ready to go, I was worn out and my head/neck was so painful. The hour passed with a little help from Spotify, my IV was taken out and I was good to go. Over the weekend I felt a touch achey, usual stomach pains, nausea and generally under the weather from the infusion but nothing major. I thought I was home and dry, little did I know it was the calm before one almighty storm…….