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!
    

New Year Update

Hi everyone

Happy new year! This year so far has been a bit of a busy one for me, hence my first post of the month being on the 18th of January!

Before I start, I would just like to acknowledge the late Alice Pyne. It was so sad to hear that she had passed last weekend. She was an inspiration to so many people and she showed that just because you have been diagnosed with an illness that you will have for the rest of your life, doesn't mean that you have to dwell on it. She also showed the power of using your illness to help others, which is what I am trying to do. RIP Alice.

So since my last post, I have reduced my steroids down to 2.5mg (I'm nearly off them!). Although, I have started to get pain back in all of the places I did before, so I am wondering if I will need to go back up to 5mg :( I am at the Rheumatoid Arthritis Doctor (Dr Wood) next week so hopefully she will advise me with what to do next. I've had to start wearing my wrist support occasionally again, I am struggling to get my arm above my head because of the pain in my collar bone, my feet are quite sore when I walk and most annoyingly, my fingers on my right hand are swollen and painful again. It feels like I am taking a step back, but I hope that Dr Wood will be able help me.

My appointment next week is for my 3 month check up from my first appointment... In August!! I was diagnosed at my appointment in August, then Dr Wood gave me a steroid injection that was to last three months and then she would see me again once I had started on my medication. Well, I finally received an appointment in the post in December for January 11th at 12pm, in Kendal! I had to ring up and rearrange for an appointment in Ulverston, otherwise I would have had to take pretty much the whole day off. The problems I have had with getting appointments has been ridiculous!

On a more positive note, I went to my monthly clinic with the Rheumatologist nurse this week. My blood test results showed that during the week that I was ill in December, my inflammation count shot straight back up to when I was first diagnosed with RA, so it was four times higher than the week before. Luckily my next blood test showed that it started to go back down again after that, so it was just down to me being ill. But other than that, my blood results showed promising signs, which means that I have now been passed to my GP and no longer need to go to the monthly clinic. It also means that I only have to get my blood tested once a month now rather than every two weeks which is also great news!

I am still on 6 pills of Methotrexate once a week, which I am pleased to say still aren't causing me too much trouble. I do tend to feel a bit dizzy and sometimes a bit sick on a Wednesday, but nothing too horrendous!

My new addiction

Apologies for the delay since my last post, I have been rather busy over the past week with several appointments and errands to run. Hopefully I will be able to explain why in a few days, but until then I will update you all on my progress.

I am definitely noticing improvements in my condition. Firstly, I am nowhere near as tired as I used to be! I used to struggle to get past 7pm without wanting to get into bed, whereas now I am managing to make it to around 9pm/10pm before I think about getting in to bed. (Wednesday is my exception though because Jamie is at night school so I get into bed really early!)

Secondly, I can now get out of bed straight away now. Before hand it would take about an hour after I had taken my steroids before I could even think about moving, whereas now I get up straight away. I am still sore when I first get up and it does take a while to loosen up, but it is much more bearable these days. 

Sadly, my finger is still not showing any changes at all!!! I'm due an appointment with my rhuematologist doctor over the next few weeks so hopefully she can put my mind at ease and tell me that it will get better eventually. On the brightside, I have still not had any negative side effects from the medication, which is fab!

I also wanted to talk about my new addiction... walking! Over the past week I have been for 3 walks with a total distance of over 11 miles. I love getting wrapped up, turning on shuffle on my iPhone and setting out for a walk on my own. Its a great to get some head space and time alone with your own thoughts, plus the fresh air makes me feel great afterwards. I was planning to do a nice long walk tonight, but my foot has started to hurt when I got home so I am reluctantly having a night with my feet up in the hope that its better tomorrow.

Keep your eyes peeled for my next blog post... I will hopefully have some exciting news to share!

Improvements...

Hi everyone

I noticed a few improvements in my condition over the weekend, so I thought I'd let you all know!

Firstly, on Saturday morning, Jamie (my fiance) and I were up at 6.30am because Jamie had work. Usually when Jamie works at the weekend, he drives me home because I don't have time for my steroids to kick in before I have to drive. However, this weekend I managed to drive home 15 minutes after getting up without too much discomfort! I'm not saying it was a pain free drive, but certainly bearable, which is a huge improvement. This got me thinking that maybe I don't need to wake up at 5am to take my steroids anymore... The past two days I have taken my steroids at my normal wake up time of 6.30am and have managed to drive to work okay. So no more 5am wake up calls!!!

Secondly, after getting home, having my breakfast and catching up on Friday night's Children in Need Show (I recorded it so I just watched certain parts) I decided that I would go for a walk. My dog isn't very well at the moment, and Jamie still at work, so at 10.30am I set off walking on my own with only my iphone music for company. I didn't have a planned route or time to walk, I just went where my feet took me. I was quite surprised when I walked back through my front door to see that it was 12pm and I had been walking for an hour and a half!

I took this picture of the Abbey on my walk, how pretty does it look?!

I felt great after my walk! Admittedly my feet were a bit sore and my legs were ready for a sit down, but all in all the fresh air and exercise left me feeling awake and energised. After so long of hardly being able to do anything, it is so nice to finally become more active again. Im looking forward to my next walk now!

My third improvement is I have decreased my steroids again by 2.5mg, so I am now on 12.5mg. Each time I decrease, for the first few days I feel slightly more pain in my joints, but then it starts to get better again. I think this is because my body needs a few days to adjust to the new level of steroids. Im going to keep decreasing them by 2.5mg every few weeks until I am either in pain again or hopefully, until I am off them completely. Fingers crossed its the latter!

The only slight disappointment is my index finger still shows absolutely no sign of improvement. It is still swollen and I still cant straighten it or use it for anything. Maybe my next dose of MTX tomorrow will start to help.

MTX week 6 & Winter Walks

Hi Everyone

There is not much to say in terms of MTX week 6 to be honest, as there are still no significant changes. I am not in any less pain and the swelling of my index finger in particular is just as bad. At the same time I have not had any side effects from the drugs other than feeling dizzy in the morning that I take the MTX. So in that respect, I'm still waiting!
On a more positive note, I have decreased my steroids again by 2.5mg, so I am now on 15mg a day. I decided to decrease my steroids by myself because the visits between seeing my rheumatology doctor is 3 months, and there was no way I was waiting 3 months to start decreasing them!

I don't like taking the steroids for many reasons; 

• they can thin your bones, 
• they can destroy your stomach
• they stop your body from producing natural hormones and many other side effects. 

But the main issues I have found are constant hunger, reduced memory and water weight gain (mainly on my face). Lots of people have said that they can hardly tell I have gained weight and that my face has become more rounded, but I can tell and I have felt very self conscious about it all. You know your own body and you know when something changes.
Therefore I decided to start walking as well as decreasing the steroids, to try and shift this stupid water weight! In order to manage walking I have to strap up my feet and wear a knee support, but its worth it and I am really enjoying becoming more active again. I also love walking in the winter in the fresh air, its my favourite time of year.

Last night after walking for an hour with my dog and niece, I sort of ruined my hard work and had a hot chocolate with cream and marshmallows! I'm not usually a fan of hot chocolate to be honest, I am a big tea drinker! But on the rare occasion that I have one, I go all out with cream, marshmallows the works! I made one for my niece too and it seemed to go down well! I must admit, it was rather tasty and I can see myself having a few more over the winter months. But isn't that part of the fun of cold weather? Walks in the fresh air, big, comfy clothes  and lots of warm food and drinks?!

Don't you just love winter?!

  

MTX Wednesday - Week 3

Well its Methotrexate Wednesday again already!

Today I had to increase my dose to 6 pills, giving me 14 pills in total to take this morning. Once again, I seem to have a bit of a dizzy head and I'm not feeling 100%, but at the same time I'm not throwing up or having to go to bed, so I can't really complain.

This is what I had to face at 5am this morning!

I also had my first blood test to check my liver functioning. I have to get this done every two weeks for the next few months, because MTX can cause liver disease among other things. So this morning I had to take myself up to the Path Lab at my local hospital (Furness General). 

Since the path lab opens at 9am, I thought I would get myself there nice and early and try to get in and out as quick as possible. But I arrived for 8:45am to find a large group of people waiting in the corridor. I got my queue ticket which said I was patient 14, so much for in and out! 

Just after 9 they opened the doors and let us in, so once I had handed in my queue ticket and blood test requirements slip at the reception I could sit down in the waiting area. I know I must have only been stood for 20 minutes, but I was desperate to sit down by this point! 

This is the slip I have to hand in at reception to tell them what I need to be tested for.

 
I ended up having to wait for about 40 minutes, but once I was called, the actual blood taking was quick and painless. I have had quite a few blood tests over the years, so getting it done never really bothers me anyway, but I have one or two experiences when the nurse cant draw blood, and I get turned into a human pin cushion! Luckliy this was not the case today!!

So overall not a bad experience for my first trip to the path lab, just a few pointers for the future:

1. 15 minutes before is not early enough to be in and out - maybe I'll get there for 8:30 next time
2. Take a book to read - it can be a long wait!

And as for the MTX, I haven't seen any improvement in my condition as of yet, but at the same time I haven't had any horrible side effects either. There's still a long way to go...

MTX Wednesday - Week 2

Hi everyone :)

As today is Wednesday, it was time for me to take my second lot of Methotrexate (MTX) this morning. If you haven't read my first post, I started taking MTX last week to treat my Rheumatoid Arthritis. At the moment I have to take 3 MTX pills once a week, however next week this will be increased to 6 pills.

My Wednesday morning pills (The yellow ones are the MTX)

I was told that I would see no positive effects from the MTX for at least 4-12 weeks, however I may start to feel some unpleasant side effects right away. The nurse said it is pretty common to feel or be sick and to feel generally unwell for a few days, but she also went into detail about a large list of side effects including ulcers and hair loss. There is more information about the side effects here. I know they have to cover every possible outcome just in case, but I couldn't help feeling worried about what was going to happen when I took the medication! I have to take Folic Acid on a Saturday, which is meant to reduce the side effects of the MTX, so this gave me some comfort. But again its just another pill to add to the list that I have to take.

My medicine drawer - steroids, MTX, folic acid and prescribed extra strength pain killers.

I have to say that so far I haven't really had any side effects. I feel a bit dizzy, sort of like my brain is taking a second to catch up with my eyes, but other than that I haven't felt any different. I haven't been sick thank goodness, which is what I was worried about because I have a history of not being able to stomach any medication (even Penicillin). But it is only the second week, I wonder if the side effects will kick in next week when I go up to 6 pills... Did anyone else find that the first few weeks were relatively side effect free?