I’m not well. I’m always not 100% well but these last few weeks I have been, UNWELL (with capitals and everything).
I don’t really know what happened, could be anxiety, could be the HMS or my insides could have decided they want to have a good old shift around, either way I feel pretty nasty. The pain has been fairly bad but it’s kind of paling in comparison to the sickness and general feeling of death I’ve accumulated.
I’ve been having cramping, sickness, headaches/migraines, stomach pain and weakness. I’m up at night with pain, palpitations, a general feeling of unease and a swollen stomach. I’ve gone off food. I eat to keep the calories up but the way it makes me feel I’d be pretty happy to cut out eating all together.
I went to my Dr and she suggested having the coil fitted as they think it could be that my periods are bad due to the HMS. The lack of period will hopefully stop the cramping and sickness and all of that but I don’t know if it will combat anything else. I’m still working on that referral and the way I’m feeling right now is really making me want to push the Dr’s hard to get what I need.
The physio I see on a Monday says that they are coming to an end of what they can do for me so I shall have to seek more specialised help elsewhere which sucks a bit, but on the plus side it gives me request a bit more wallop.
I also have my referral to see someone about doing nerve conduction test on my left hand *whoooo!*. I’m pretty glad that that’s going to be resolved (fingers crossed). Aside from that it all kind of sucks a bit and I just want to go wallow in my girl cave with puppies, ice cream and cheap films until the end of time.
I’ve been off work for a week and trying to cram in as many activities as possible. On Thursday I went up to London to watch a show and go around the Natural History Museum with my boyfriend. I had a great time but boy did I feel it the next day.
In my wisdom I thought that a light gym session on the Friday might ease things up a little. The cramping and hip pain was starting to get to me. I initially planned to lay off some of the heavier machines and focus on equipment like the exercise bike that I can’t fall over on.
When I got there the place was pretty full. Loads of people were in full New Years Resolution swing; watching all these abled bodied people run and jog to their hearts content on the treadmills made me green with envy. I wanted to be able to run, to jog, to really work up a sweat. Instead I’m trapped in this frail, painful body that simply won’t allow me to do these things without repercussions. Regardless, I decided to push it.
I did what most people would describe as minimal work, but for my capabilities I really over did it. I was in a fair amount of pain five minutes into the treadmill, by the time I got around to the exercise bike I knew I’d overdone it. A friend helped me up off the machine and as I put my foot to the floor I felt my hips clunk back into place. I’d done all of that bike work with hips that weren’t in the socket properly.
I could barely move. Everything seized up and I was rendered almost useless. I got out my walking sticks and attempted to carry on with my usual routine but that night I still had to crawl up the stairs to get to bed. The swelling around my knees was pretty brutal and my ankle hasn’t really been right since, possibly because I’d been overcompensating in the ankle for the fact the hip was out.
Either way, it wasn’t my smartest move. I’m trying to get a referral to the big HMS clinic in London, I’m not confident my Dr will do it for me but I’m hoping that the private health care that my workplace offers will sort me out. I need to do something before a limb falls off!
This morning I looked at my finances and realised something has to give. I work 29.5 hours a week, I’ve asked for an increase in hours which work will not give me. I’m annoyed and relieved; I need the money but on the other hand working 39 hours a week will just ruin me physically. I don’t think I’d be able to manage it and even if I tried to slog my way through it my quality of life would suck ass with all the pain, fatigue, mood swings and everything else.
So I’m broke. I was forced into buying an automatic car because of the HMS. The gear stick was playing total hell with my shoulder and elbow and my left knee buckled constantly because of the clutch use. I can’t walk for miles and I live in the middle of no where with no public transport links. I couldn’t walk to and from bus stations anyway. So I pay for that on finance and that sucks a HUGE amount of my money and will do for the next 5 years.
On top of that I have medication costs, supports, heat patches, living aids and all that to cough up for and I’ve found myself putting off doctors appointments and such because I know they’ll give me more prescriptions I can’t pay for.
I’ve decided to look into applying for PIP (Personal Independence Payments) which is the system that replaced Disability Living Allowance. I did a self assessment online which someone kindly gave me the link to and it says I’m on the cusp for both mobility and independence categories. I hope I’m doing the right thing, I don’t want to be seen as a scrounger or unworthy of the help. I’ve been working since I was 16 and paying into my taxes like everybody else does and I will continue to do so as I work. I just need a little but of support right now.
Is this the right decision?
I sorted out my pill box the other day. I had an old sewing box lying around that had been in the family for quite some time. I had been using it to sort junk in, until I thought to use its different compartments to organise my meds.
The bottom section holds my splints, bandages and supports. The rest sorts out my pain pills, stomach medication, anti allergy medication and generic medication like my acne pills, asthma inhalers and the such.
The machines and my hhuuggee bottle of vitamins have to sit on the side next to it as there is only so much the box will hit but I’m feeling pretty pleased with myself. It’s the small things in life :3
The sewing box, recommissioned as a pill box
Today I want to talk about something a little bit personal; period pains. I and many other suffers of HMS experience the total agony of woman hood once a month, every month. If this isn’t the kind of topic for you then I apologise in advance but I will try to keep it as clean as possible!
Ok so I first started having periods about age 12. For the first couple of years they were fine, I had no pain or cramping and I was often the envy of friends who suffer the agony of cramps every month. I remember boasting about the ease in which my periods slipped in and out of my life every month, one May afternoon; that was the last time I ever had a pain free period.
I was on a caravanning holiday with family when it first happened. I woke up feeling extremely nauseous. I hadn’t felt so unwell in a long, long time and I unceremoniously threw up several times just that morning. My parents had to take me with them on their day trip, being only 12 and somewhere entirely foreign. I spent the rest of the day curled up in a ball on the back seat of the car trying hard not to throw up what little was left in my stomach, and so began ten years of monthly agony.
I really do mean agony as well. The pain starts off as a dull, internal ache which slowly spreads out and becomes like a bad of tight, hot, painful muscle around my back and abdomen. It is absolutely the worst kind of pain, totally relentless and crippling. This is often interjected by stabbing shooting pains that make me cry out or stop mind stride and last for about 20 seconds or so. I also get rippling sensations in the areas that hurt as the muscle spasms with the force of pain and the inability for it to handle the period process itself.
All of my muscles are weak and it makes sense that all my internal muscles also suffer the same weakness. I have a never ending barrage of internal issues but this is by far the worst. I’ve tried pelvic floor muscles, different vitamin supplements, the Pill and pain killers. Nothing seems to work.
Today has been the worst day I’ve ever had. I had to come into work as I’ve used up all my sick time and spent most of it lying on the bathroom floor sweating and shaking in pain. I’ve taken pure codeine with no effect and I’ve just had some NSAIDs (anti inflammatory medication like ibuprofen) which has taken the edge off thank God.
I need something else though. The Pill doesn’t agree with me so I will have to start looking at other contraceptive options. 10 years of this is more than enough. Besides the pain I’ve never been regular one month it will start on the 31st the next it’ll be on the 15th, sometimes I can go 7 weeks or so between menstruation. I have to make this stop, anyone that has any ideas I’m totally ready to hear them!
So, I went back to the hospital again on Friday to have my wrist looked at. For those who don’t know I trapped it in a door way back in November. Thank you HMS and your slow healing properties! It was only trapped for a second or so but the nerve damage I have suffered has been long lasting, unfortunately.
I saw the same outpatients doctor who treated me oh my first visit and told him that whilst it had improved in the first two months progress had slowed to a stand still in the last four weeks. He asked to call in a colleague from the next door who also wanted to have a look at what was going on.
I think he might have been training as my doctor asked him questions about the nerves and how he would test for certain types of damage. The poor guy looked like a rabbit caught in headlights! They did a selection of tests to try to determine what kind of strength I have in that had; turns out it’s reduced strength in comparison to the right. Both hands are also generally weak.
The tingling and numb sensation, mixed with [ain and muscle weakness is apparently indicative of a damaged Ulnar nerve and I’m now waiting on an appointment to have my nerve responses tested. I’ve got to have some electrical impulses put through them to see if there is any substantial or long lasting damage.
The doctor said that it still may not show anything and I will just have to wait it out to see what happens.
Next time, I won’t pick a fight with the door!
I’m the stubborn type. I don’t like to admit defeat and I’m sure as hell not going to give in unless I absolutely have to. So when I went to the doctors on Tuesday last week and they told me that I needed to take it easy. I need to do less exercise and relax a bit more.
Problem is, I barely move around as it is. I do two hours a week at the gym between Pilates and traditional gym programmes. Aside from that the only movement I get is at work and that’s a desk job so I’m not really doing much at all. If I cut down much further I’ll have exercise levels that could rival a sloth.
So, I went to my Pilates class on Monday and mentioned this to my Pilates leader and I laughed a little, expecting her to tell me the doctor was being ridiculous. She agreed with her and said that I should consider dropping my gym for a couple of weeks, maybe longer.
Obviously I’m pretty disappointed and being the person that I am I’m prepared to carry on with the gym anyway. It might be a bad idea but I don’t want to give up my mobility. I don’t want to slowly degenerate into a mushy ball of stationary misery.
I’ve been to lay off because the left side of my body is a bit knackered. It doesn’t work as well as the rest of me and my knee is starting to go a bit. They want to keep me away from strain so I can’t ruin it further.
It won’t beat me though. It won’t get the better of me and I will not give up my freedoms to the condition that I have. The condition is me but it does not rule me.