Medication Sucks!

Sometimes I wonder if my arthritis medications are really worth it.  I had my second Simponi Injection yesterday and for the whole night my head felt like I had taken a week’s supply of steroids but my body didn’t have any energy.  Of course this resulted in me having a massive headache today and felt more exhausted than usual.  I know you don’t get the benefits of the injection straight away, probably won’t feel the benefits for another month or so, but you don’t expect them to make you feel worse.  My head felt like I could do anything; get up and run a marathon, scrub the entire apartment with a toothbrush or clear out all the clutter in my room but my body refused to move.  So all I could do was stay in bed with my thoughts.  Lying in bed with all these thoughts racing and spinning around my head driving myself crazy isn’t my idea of fun, especially knowing that spending too much time overthinking things is very bad for my depression.  If I wasn’t suffering with a chronic illness would my depression have improved by now?  If the new medication doesn’t work soon how much worse will my condition get before I find something that does work?  Will I have improved by this time next year or how will I be suffering in 5 years’ time?  I have so many thoughts and questions running around my head that I can’t answer.  I know I shouldn’t be thinking like this but my head just wouldn’t stop. 

I’m also questioning why my other medication doesn’t seem to be working.  I’ve been on a higher dose of Methoject now for four months and my arthritis seems worse instead of better.  The pains in my wrists and hands are worse than they used to be, the pains in my face, jaws and head are a lot more frequent than they used to be and my energy levels are still as low as ever.  Why am I injecting myself every week with this horrible stuff if it’s not even working?  Would I be way worse if I stopped it?  I feel like every week I seem to have a new problem and it’s really getting me down.  I’m starting to feel like a complete hypochondriac and I’m starting to worry that people will think I’m making up all these problems.  You couldn’t possibly make up these pains and feelings as you couldn’t describe the pains if you’ve never experienced them.  And the feeling in your body like there’s a battle going on inside you between the good cells and bad cells and all the cells are fighting so hard it wears you out; no one could make that up if you weren’t experiencing it.  Hopefully someday soon this medication will start to do what it’s supposed to do and the good cells will win the battle.  

My Daily Life

We are all creatures of habit; we do the same things every day without even giving them a second thought.  Daily tasks such as getting up in the mornings, getting ready for work, making dinner and household chores are all part of our lives.  But when something happens and you are unable to carry out all these tasks without difficulty, you realise how much you u had taken simple things for granted.

Most of us struggle to get out of bed in the mornings, but when you suffer with an illness such as Rheumatoid Arthritis it can be much harder to get up.  A lot of sufferers wake with a lot of pain and swelling in their joints, others wake with zero energy levels.  For me it’s the lack of sleep that makes it so difficult.  On average I sleep for two to three hours a night, some nights I'm lucky if I nod off at all. So when my alarm goes off in the morning I don't feel a bit rested and would give anything to hide under the quilt for the day.  My arthritis symptoms seem to be flare up at night time.  This week has been a particularly bad week for me.  The burning pain in my feet and hands has been so unbearable I've been getting out of bed and using ice packs to relieve the swelling.  It takes a few hours before I can get enough relief to go back to bed and by that time it's almost time to get up again.  

When I finally give in and get out of bed (after a few fights with my alarm clock) I then have to shower and get dressed.  Getting dressed isn't as easy as it used to be, it’s a slower process these days and simple things like tying my bra strap with dodgy wrists is proving very difficult.  Doing my hair isn’t much fun either when I can see every day how much more it’s after thinning.  I was never blessed with a thick head of hair so losing some of what I have is very depressing.  My breakfast consists of a bit of food, some tablets and on some mornings an injection and then it's time to head off to work.  As the day goes on my fingers and wrists become so tired and painful that I end up having to wear wrist supports and my writing is so bad I struggle to read my own writing.  

When I get home in the evening I am so tired all I want to do is go to bed, not to sleep but just to lie down for a while.  Making dinner is a big effort, I usually don’t have the energy and when I do, things like chopping vegetables and peeling potatoes are hard to do.  Cleaning tasks such as hoovering, polishing and ironing don’t get done half as much as they should; not because I don’t want to do them but because I’m just not able.

Doing other activities such as walking or other exercise, going to the pub or any other form of socialising is practically non-existent at the moment.  I didn’t want to stop all these things, I feel like I’ve been forced to stop because of the tiredness and lack of energy, the pain which restricts a lot of what I can do and my lack of self-esteem which is now becoming as bad as my arthritis.

Having arthritis has changed my daily life in so many ways I never thought it would.  So I suppose it’s only natural it has affected my mood too.  It’s upsetting and frustrating not being able to do things I used to do.  It’s exhausting going through every day with only a couple of hours sleep each night.  Most days I feel like it would be so much easier to stay in bed and hide away from the world than it would be to get up and face my life.  I could wallow away in self-pity without annoying anyone with my problems.  But realistically I know that won’t help.  The best thing I can do is carry on doing as much as I can for the moment and hope that over time my symptoms will improve.  

Being Me With Arthritis

We all want to believe in a better future but trying to be positive about the future isn’t easy when the present is so hard.  The feelings of hopelessness, sadness and loneliness are so strong it’s hard to believe I will overcome them. I want to believe things will get better but I can’t. Struggling through depression the last few years has been difficult enough, but now I’m suffering with an actual physical illness that I’m finding really hard to cope with.  I wish I was strong enough to deal with the daily struggles I am faced with, but having been depressed for about eight years now I haven’t the emotional strength or the spirit I need to help myself.

Before I was diagnosed with Rheumatoid Arthritis, I didn’t really know what it was; I still don’t fully understand it.  I knew it was a condition that affected joints and caused pain, but I didn’t realise that it affected your whole body; your joints and muscles, immune system, organs and skin.  I didn’t realise that this constant exhaustion I am feeling is a part of it or constantly feeling generally unwell.  I was confusing a lot of the symptoms with depression symptoms and couldn’t understand why I was having all those feelings again when I had come so far.  My lack of interest in doing anything, my struggle to get up and get going every day, my struggle to stay focused on my daily tasks, was this me being completely depressed again or is it part of my arthritis?  Has my arthritis caused my depression to take a massive step backwards or is my depression making my arthritis seem worse than it is?  Maybe it would be easier to deal with if I knew for definite that it was all part of a physical condition because eventually I will find the right treatment and all these feelings will be cured.  But if it’s all part of being depressed I’m not sure if I can find my way back again.

It’s been almost a year now since I was diagnosed and I’m not feeling any better despite all the medication I’ve been on.  In fact, if anything I’m worse.  I have pains now in places I didn’t have last year.  Some days parts of my body refuse to work and when they do work the pain can be almost unbearable.  The pain I feel is hard to describe; it feels like I have hot broken glass going through by bones or hot nails stabbing into my bones.  I still feel as exhausted as I did over a year ago and I still have that feeling of pressure in certain areas, which I now know is inflammation of tissue, not a heart problem which I thought I had due to the constant pressure I had in my chest.  I know finding the right treatment can take time; some people are lucky to find something that helps them straight away.  I, on the other hand try things that give me all the side effects, like constant nausea and losing my hair, and none of the benefits.  I am now waiting to start a new medication and I hope that this will be the one that will suit me.  I want to be positive about starting something new but I don’t want to get my hopes up either so I’ll just have to see how it goes. 

If this new treatment works out then maybe I can start doing things that will help my well-being like walking and some other forms of exercise, which at the moment I feel unable to do as I’m too exhausted.  I might also be able to do a few social activities.  One of the things that really get me down is the fact I have lost contact with a lot of friends.  I’d love to be able to go out more and spend more time with friends but I just don’t have the energy.  Now they have all moved on with other friends and plan things without me and while this upsets me, I can’t really blame them.  They don’t understand how I’m feeling so they probably think I’m just not interested in doing what they’re doing.  I really miss having a laugh on a night out and having a good chat with friends.  Hopefully if I start to feel better I’ll have those nights again.