Month: March 2015

Pity party for one

/ RachelMorrisMcGeethemyastheniakid / 7 Comments

Before anyone suggests it, this is not a cry for attention. It’s just an expression of how I feel at the moment. Only those of you who have a chronic illness or care for someone with one will get this. The title “Pity party for one” is a complete piss take. I don’t want a pity party, I want a break from everything that is going on at the moment.

It’s difficult to come up with a blog post when all you have faced over the last few weeks is a ramping up of your joint pain and unbelievably bad health (more than normal). I don’t mind joint pain when I have partaken in activities that warrant it. That’s pay back and its normal – for me. It’s when all you have done during the day is move from your bed to the sofa and back again, it really starts sucking all the joy from your life.
I have been in tears or close to them for a few days. This new level of pain has brought me down, I have upped my dose of painkillers but it doesn’t do anything much or it takes all day before I feel any relief. When the pain is bad I am convinced I am depressed, when it eases off I know it is the joint pain that is so badly affecting my mood that I want to go to sleep and not wake up to face another day of pain. That is how bad it is getting and I have no idea why. I don’t want to die or do anything stupid. This is not a cry for help. This is the sheer level of frustration you feel when you are on a runaway pain train. You do not know how you will possibly get through the next hour let alone the other 23, only to face it again, day after day.

You get through it, you don’t know how but you do. The exhaustion leaves you feeling like a zombie and wipes out any reserves you may have had. I don’t know how my body still functions but it does. I know at some point I will get back on top of the pain. I just don’t know how or when. I am sick of waiting.

I can live with a certain level of pain. I have had to, I spent from 1999 to 2011 without medication because I couldn’t get anyone to believe how awful the pain was. I have been on top of it for a few years with the occasional flare up. This pain flare up has building for a few weeks. Its changed from the constant aching to a sharp pain that is unrelenting. I can only describe it as feeling like my knees and hips have been replaced with metal spikes. Every movement feels like the metal spike is rubbing along the bone beside it. Today every time my right foot went to the floor I wanted to cry. I hate using walking aides in the house as they are so very limiting – you can’t carry anything when you use a stick, frame or crutches. I tend to use the furniture to help me hobble around. I seriously considered using my crutches, for me to even say that out loud means I am in a considerable amount of pain.

However I am conscious that I need to keep moving. One of the things you do when you are in pain is limit your movement, its only natural to stop doing something that hurts. With EDS we need to keep moving as much as we can, as not using a joint could mean in the long-term more problems. It’s hard to keep that in your head when you want to scream every time you put your foot to the floor.

I am not looking for sympathy, I am just giving you a peek into my life. Its the bits no one sees because I wont let them.  I hate feeling this miserable, I hate the pity party I am currently throwing myself, it just isn’t the real me. It wears you down, exhausts you and causes you to draw into yourself rather than live in the real world. I am at times too exhausted by it all to speak.
You would never know if you saw me in person. I am good at hiding it in plain sight. I can keep a fake smile plastered on my face for a couple of hours. I can keep a light and breezy conversation going whilst my vision goes grey as my blood pressure drops. I have become so good at hiding the sick me, I sometimes doubt how ill I am myself. Then reality strikes, as on Sunday when I lost the ability to urinate again. Thankfully for some reason I could place the catheter when all attempts on previous days had failed. Its only when bits of me stop working properly that I have to acknowledge that life is not normal. I am left asking myself how did I get here? What happened in 2007 to change the course of my life so dramatically? I have no answers.

The only person that ever sees my struggle is my husband. I would be lost without him. He is the only thing that keeps me going at the moment, well him, the dogs, my parents, my sister and her family. I am struggling underneath the weight of this pain. If I could just get some relief just for a few hours I would feel like me again. I wouldn’t have to wear this mask that I hide behind for fear of people seeing how weak and vulnerable I am.

I am sorry if this post seems negative. It’s not meant to be, it’s a picture of what life can be like when you are chronically sick and trapped within your house because the pain and stimulation of the world outside is just too much for you. I rarely feel as low as I have for the last few days. I know at some point I will catch a break and I will feel better – better than I do right now. It will happen, it always does, that is what I cling too. 

“This too shall pass”

Eustachian Tube Dysfunction

/ RachelMorrisMcGeethemyastheniakid / 1 Comment

Just when you think you are managing to cope with everything that has been thrown at you health-wise, life throws you yet another curve ball.

For nearly two weeks I have been suffering with increasingly debilitating bouts of dizziness. Initially I believed this to be low blood pressure, as when measured it has been on the low side but nothing strikingly different from normal. 

Last Thursday it ramped up a gear which was excellent timing, (isn’t it always?) as I had a hospital appointment with my consultant. Half way through chatting to the stand in (my consultant was on annual leave) I ended up having to put my head between my knees. It was so severe that the dizziness left me unable to speak for 30 seconds and believe me that is a tough thing to do. The stand in was concerned and offered me a glass of water. I declined because the way my stomach was feeling I knew it would induce vomiting that would be unable to stop. They then took my pulse and blood pressure. In the following few minutes they suggested that I needed to come into hospital…..next week. I declined.

You may think I am mad for declining but my reasons behind it were firstly I have been declining in health for over a year and have been left to get on with it. Plus I was feeling so poorly at that moment in time the only thing I wanted was my own bed, darkness and not to be subjected to countless examinations. Yes I was sick but regular readers are aware of my love of hospitals and the rules for calling an ambulance – unconsciousness or if I ask for it. I didn’t feel sick enough for a hospital stay. There were also economic reasons for not wanting to be admitted. Contrary to popular belief in the UK those of us unlucky enough to find ourselves in a position where we can’t work, are not living a life of luxury. To be in hospital for a week meant my husband taking a week off work unpaid. That is money that we can not do without. He is out of holiday pay and there is a great deal going on in the business he works for. He doesn’t need to be attracting the negative attention which caring for his disabled wife would most certainly draw.

The registrar and I agreed on a date in April for my admittance however that all depends on whether the hospital is on black alert. Black alert means there are no bed and only medical emergencies are being admitted. Unless its life or death you aren’t coming in. Due to cancellations of operations that I am aware of, I would hazard a guess the place is close to a black alert again. With this being booked in advance my husband can book paid leave and we can put in place the support we need.

After the hospital appointment I slept for close to 24 hours, something I never do. I am always tired after appointments but I rarely sleep. When I woke up I suddenly realised what was causing the dizziness. It wasn’t my blood pressure but my ears. My Eustachian Tube dysfunction was back for the first time since 2012. The familiar feeling of pressure in both ears, tinnitus and dizziness was back. Until the Saturday morning I had no feeling of pressure in my ears, so I had been barking up the wrong tree for the cause of my symptoms. No wonder increasing my salt tablets and steroids had done nothing to alleviate the spins.

Knowing what is causing the issue always reassures me. I dosed myself up on travel sickness tablets and took some over the counter steroid nasal spray to try to reopen my Eustachian tubes. The tubes are connected to your sinuses, so although my sinuses weren’t feeling blocked somewhere between my nose and ears they had become inflamed causing them to swell so much they collapse shut. When looking inside the ear a doctor can see that the ear drum is inverted, which caused by the pressure of the tubes swelling shut. Obviously I can’t see this but I can feel it. The feeling closely resembles the pressure when taking off / landing in an aeroplane or when travelling in the car up a steep hill. Your ears feel like they are on the verge of popping but never do.

By Monday I had to admit that the dizziness was getting worse. It was making me nauseous and I was unable to sit upright for more than a few minutes at a time. The Dr prescribed me some stronger steroid nasal spray and some anti sickness medication. Unfortunately the anti sickness medication although wonderfully effective didn’t agree with me. Diarrhoea and dizziness do not go well together.

This bout of inner ear problems is the worst I have ever suffered. It has been so debilitating I have been stuck in bed for close to a week. I am as white as a sheet, can barely walk as my balance is so bad and I just feel absolutely awful. Nothing other than lying completely still stops the dizziness. Sometimes the room spins violently other times the dizziness is internal. I have been so ill my husband told me he was staying at home to look after me. Every time that he has stayed at home to look after me I have had to ask. This time he took one look at me and told me, this was not up for discussion.

I have barely been able to use the computer, something about the screen seems to set the dizziness off so this post has been written over several days a sentence at a time. Hence why this post is a lot shorter than normal.

The good news is that this will go away, the bad news is it could be weeks or months until it is completely resolved. If it doesn’t resolve I may need grommets to try to keep the tubes open. Wish me luck!