Wednesday, 6 February 2013

10 Things I Took For Granted...

Below is a list of the top 10 things I took for granted before having Rheumatoid Arthritis:

1. Washing & styling my hair - Since my hands have become very painful and swollen, I have lost the ability to squeeze anything. I currently use herbal essences shampoo, however the design of the bottle is a nightmare for me to get anything out of it, particularly the conditioner! I have devised a new way of getting the shampoo out of the bottle, which is pressing it against the wall with one hand and putting my other hand underneath to catch the shampoo, but this does take a lot of effort. I think I may start choosing my shampoo based on the bottle rather than the contents! Once I have got the shampoo out, I really struggle to get my left arm higher than shoulder height, which means anything to do with my hair has to be done with one hand. It doesn't sound that bad, but try washing your hair with one hand, its not that easy! Especially when the fingers on the hand you're using are swollen. This also goes for putting my hair up, so if you see me going for the "bed head" look, this may not be out of choice, it is probably because I haven't been able to do anything with it!

2. Not having to worry where I can get a parking space - There are times when no matter how sore/tired/lazy/ill you are feeling, you have to go shopping, and this applies to everyone! There's always that one thing you consider leaving for another day, but in the end, you really need it that day and have to go out. On these days, I will drive round and round for ages to try and find a spot close to the shop that I need to go to. Even if I have been driving for 15 minutes and there is a perfectly good spot further away, sometimes I just cant manage the walk on top of having to walk around the shop.

 3.Wearing what ever shoes I want, when I want - I adore shoes! And in particular, I adore high heeled, platform shoes. However these do not mix with swollen and painful feet or weak ankles. Don't get me wrong, there are some days when I can wear heels, but more often than not, I can't. If I know I want to wear heels at the weekend, I do try to walk less during the week to try and keep the pain down, but this does not always work. Also, it's not just heels, sometimes I cant wear a pair of flat shoes simply because my feet are too swollen to fit in them.

4. Helping people - So many times I hear "will someone help me carry this" or "can someone pick one of these up" and previously I would be the first one to help. Even though I am small, I was surprisingly strong and would never think twice about helping someone with anything. But now I simply can't! I am in pain in so many places that I struggle doing things for myself let alone helping anyone else. My consultant also told me that putting too much pressure or strain on an affected joint could tear my tendons around it very easily. Even though I know this, I always feel guilty when I hear someone ask for help , especially when no one else volunteers and sometimes I will try anyway. 

5. Being able to pick up a cup of tea with one hand  - I first noticed the start of my arthritis when I felt pain in my knuckle picking up a cup of tea. Since then it has spread to my fingers and wrist, which makes it incredibly painful to pick up anything with one hand, even a cup of tea! I cant put any pressure on my index finger because it is so swollen or my middle finger because the knuckle is so painful, which means that the only fingers I can put in the handle part is my ring finger and little finger. If you've never tried picking up a cup of tea with just those fingers, it's really hard! My left wrist is also too weak to hold it, so I have to share the weight between both hands.

 6. Enjoying lying around in bed at the weekend - I used to love the feeling when you first wake up at the weekend, with no need to get up right away, so you can just lie in bed  under your nice warm covers and wake up gradually. Not anymore! Now when I wake up, I want to sit up right away because something, somewhere will be hurting, no matter what position I lie in.

7. Unlocking a door - It is a nightmare for me when I have to use a key to unlock or open a door! I find it really hard to grasp the key and then I also really struggle turning it. I feel like Alice in Wonderland trying to open a tiny door, using a tiny key, with a massive hand! I have to use a key every day to get in to work and quite often at weekends there will be no one home when I arrive. There have been times when I have spent 10 minutes outside my house trying to get the key into the lock or trying to remember which way I am meant to turn it, because neither seem to be right!

8. Being able to open up bottles, jars and packets - This is a bit of an obvious one, but when you have swollen fingers, it is almost impossible to open anything. I can't count the number of times I have gone to make pasta and not been able to open up the jar of pasta sauce, or gone to make a drink and can't open up the vimto bottle.  It is so frustrating when you are on your own.

9. Not having to arrange my life around medication - At the moment, I take 8 pills of methotrexate on a Wednesday morning. This means that my Wednesday evening is pretty much a write off because I feel horrendous. I have never known nausea like it and it can last for days. I try to arrange everything I have to do in the week so that Wednesday is clear. That way I can go home after work on Wednesday and spend the night watching films, reading or having an early night. I also have to take advantage of the times when I don't feel sick and try and eat something, because at the moment I can't make it through a meal without having to stop due to feeling sick. I can't actually remember the last time I ate a full meal.

 10. Feeling secure in public places - It has never been something to cross my mind until I got RA. But if I know I am going to a public place, I can't help but worry that I am going to get hurt. Places like pubs and clubs are the worst because people will just push past you without thinking that they could be doing some real damage to a person who is fragile. But I even worry in places like waiting rooms because I'm scared a child is going to bash my feet while I'm sat down. I didn't realise before, but public places can be very stressful places because you have no control over other people.

This may seem like a negative post, but I thought it was important to show what RA sufferers go through on a daily basis. I also thought it was important to highlight how much some people take for granted, I wish I realised before hand. They may seem like small issues, but it's hard to deal with when they occur on a daily basis and you never had this problem before.

My next "10 things" post however, will be a positive one , so look out for it!

Friday, 1 February 2013

Steroid Free

Hi everyone

So since my last post, I have decided to come off my steroids completely. They weren't doing me much good painwise and they were giving me far too many problems. I started to get a painful and bright red rash around my mouth and on my chin, I put on nearly a stone and they gave me terrible heart burn. I have been taking steroids since July, but since I was on 2.5mg before hand, I decided that I might as well just stop altogether.

Red and swollen index finger
My main concern with coming off steroids was that my foot would balloon again, like it did last time I stopped taking them. Luckily this hasnt happened! The arthiritis has got really bad in my shoulder and collar bone, I can't raise my left arm above my head without being in a lot of pain. My index finger and middle knuckle is also causing me a lot of greif at the moment too and to be honest, my pain is back pretty much everywhere. I am also beginning to get really tired again. This was all already happening before I came off the steroids though because my tnedication wasn't working, so I am not going back on them! At least now my consultant and RA nurse can see my real pain rather than it being masked with steroids. 

Swollen index finger
As for increasing my dose of Methotrexate, there has been no positive things to say yet, but I am struggling to eat because I feel so sick from it. I took my latest dose on Wednesday and have felt constantly sick since. Im hoping that the Folic Acid I need to take tomorrow will do it's job and get rid of the nausea.

Hopefully, my next post will be something positive to report on!