Living with chronic illnesses

As it happened, having Covid wasn’t as bad as I feared. I suppose I got so worked up and panicked because of being ‘vulnerable’ and everything I'd heard about it. After testing positive I called my consultant to find out how it would affect my medications. Because they are immunosuppressants I was advised to stop taking them. I had to top up on paracetamol and ibuprofen instead, keep checking my temperature and call if I needed help! 10,000 Steps Forward... The first few days I had the worst headache and what felt like a burning nose and a slight cough. No persistent temperature though I did keep going hot and cold, and no dry cough either. So I thought, ok this isn't so bad, let's hope it stays this way. I carried on with my 10,000 steps a day, doing the housework, YouTube workouts, walking on the spot, up and down the stairs and dancing with the boys. You name it, I did it, Ha! Until about the fourth day, when I felt like a bus hit me. Everything ached, and I had zero ene

First off, I want to apologise for not having written anything on this blog for what feels like forever. Every week I've tried to build up up to it and failed. I'm only writing this now because it's the first day for a long time I've felt a bit more human. But I haven't been lazy, or feeling sorry for myself. In fact, you won't believe what's happened to me in the past month or two! In my last post I spoke about the new medication I'm starting on. This will HOPEFULLY happen very soon – but I'm not looking forward to it. I should be thankful, I know, but I can't help but be nervous and scared when I start anything new. Even though it could be the best thing to happen for my RA, there are always doubts and "What if?"s. Anyway, since my last post, October happened! Wow, that was a HARD month. First of all, I took up a challenge from the Versus Arthritis charity to do 10,000 steps a day throughout October. The aim was to spread awareness of

It’s been about three weeks since I last posted, although it feels much longer. After all those regular updates I needed a short break to process things. Obviously, I’ve also been carrying on with my therapy and I believe I’ve now got a better grasp of how my anxiety and panic arises, and what I can do to make it less debilitating. I still struggle with it and always will – it will never go away. Like everything else, I have to learn to deal with it the best I can. Anxiety in particular has been so intense for me, it sometimes feels like it’s the biggest part of my life, part of everything I do. With regard to that, somebody close to me recently took time to explain about anxiety and what its physical origins are. To be honest, I haven't looked at it the same since. Don’t get me wrong, it hasn’t gone away, but it has really helped me understand it a bit better. I believe I now know where it comes from and how it works, and I want to explain it to you as she did to me, so that if yo

I don’t ask to be like this, trust me I would rather be living a normal, pain-free life. But the reality is I will never be that ‘normal’ person. I will always be a girl living with chronic and mental illnesses, and with that comes the good, the bad and the ugly. It’s hard enough to admit this to myself, but having people doubt it, as I mentioned last time, is not the greatest feeling. To add to my woes, and probably as a result of all that’s happened to me in the last two or three years, I’ve recently been diagnosed with Health Anxiety and Panic Disorder.   To break it down a bit, Health Anxiety is when you spend so much time worrying you’re ill or about to become ill , it starts taking over your life. Symptoms include: Always worrying about your health Constantly checking your body for changes Seeking reassurance from others that you’re not ill Worrying your doctors have missed something Obsessively looking at health information on the internet or in the media Avoiding anything t

This week I want to talk a bit about how living with Rheumatoid Arthritis (RA) and fibromyalgia affects me mentally. As I’ve mentioned before, I’ve never really accepted having these conditions, although I am learning to deal with them. However, there are many days when I feel I can't even do that. I’ll sit and get upset, go over it all in my mind and ask myself, ‘Why this is happening?’ I often have panic attacks, overthink things, and then Mike will have to calm me down and reassure me I’m doing great. Yet I’ll still be convinced I’m not getting any better and, in fact, am getting worse. I start to think maybe things are never going to improve and that’s when panic kicks in. My heart starts to race, my chest gets tight, my palms get sweaty and suddenly I feel like the whole world is crashing down on me. A hammer to crack an egg The worst feeling is not being able to do normal day-to-day tasks. As an example, even on a good day it’s agony for me to just cut up bread. I have to use

After the physical shut down I described last time , my younger sister Beth had to assume my role for the day, and mother my children because I wasn’t able to. Mike wasn’t staying with us at the time due to the coronavirus situation, as when I first received the inevitable vulnerability letter I went to isolate with Beth and my mum. Mike had to carry on working, so even if I wanted him to come and help, he couldn’t.  During a phone appointment with my medical team I mentioned the difficulty I was having taking my meds and they reminded me (again) how important it was to get it under control. With a condition like mine things can go from bad to worse pretty rapidly and, in my case, this was happening. My doctors also told me they’d identified my condition as Seropositive Rheumatoid Arthritis , which tends to result in more severe symptoms and greater deformities than the ‘normal’ version. Since I’d just been diagnosed with fibromyalgia as well, this was not great news. And it worried m

In the coming weeks I started to feel a little better, at least mentally. I got it all off my chest with the family letter, and felt I was coping. There was a nagging doubt, however, because the way I was feeling physically wasn’t right. I was in pain in places that didn’t seem to fit my diagnosis of rheumatoid arthritis (RA); namely my upper arms and forearms, shins and thighs. I was also a bit confused and lacking concentration — often I would be mid-conversation with someone and suddenly forget what I was going to say. If my boys were playing and one of them accidentally banged into me, it hurt so much, and the pain took a long time to go away. Crazy right? Who knew babies could be so brutal! I stubbed my toe one time, which we all know can be painful, but this was something else. It was so bad I thought I’d broken my toe, and I couldn’t seem to get over the pain. Ha, ha, yes, I know I may be a drama queen but, joking aside, it started to worry me. And then there were two I mentione

Within the next few weeks, I had my first sessions with both occupational therapists and physiotherapists. For those who don’t know, occupational therapists work with people of all ages and look at your daily activities at home, school or workplace to see what you find difficult and if there's a better way you can do it. It’s a great help to me because there are certain tasks I find difficult to do, more so on flare up days but also generally. Small stuff to most people, like opening the lids of jars or tins, lifting or carrying shopping bags, picking my babies up etc., but they are big obstacles to me. As well as helping with the tasks I struggle with day to day, these sessions help so much with my mental health and general outlook. Physiotherapists similarly work with people of all ages with a wide range of health conditions. Physiotherapy aims to improve your physical activity while preventing further injuries. I benefit from this because there are techniques and workouts I ca

Figuring out a routine for my treatment was not as easy as I thought. For a start I couldn’t get my head round taking medication every day at specific times, sometimes with food, sometimes without, and then at the same time each day. It was so confusing, and since I couldn’t even remember to take paracetamol regularly, how was I ever going to cope with this, especially with a new baby? I couldn’t figure it out; some days I would take it how I should the next I wouldn’t, then I'd forget and other times I couldn’t take it because I hadn’t eaten properly. I could barely find time to shower let alone remember to eat and take medication! Also, at this point I didn’t know how important it was for me to take all the medication in the way I was advised. I didn’t fully understand what could happen if I didn’t. The drugs and what they do The specific medications I take are called Disease-Modifying Anti-Rheumatic Drugs (DMARDs). These medicines ease the symptoms of the condition and slow down

When we were allowed home with our new baby, it was such an overwhelming experience. Bringing Alfie home, I knew Harry would absolutely adore him and as this was my last baby, I also knew it was a special time we would never experience again. It was, as I expected, truly amazing. Harry did see Alfie at the hospital, but it couldn’t compare to just the four of us in the comfort of our own home. Our happy little family, just us, forever. It’s these memories I cling to and look back on to remember why I am here and why I am doing this. First days and struggling to cope During the following days I started to feel the effects of having had no medication for nine months. The pain hit me so hard, and it didn’t just hit me in one place; it was everywhere. The nights dragged on, and I could barely hold my new-born baby without crying in agony. My wrists and elbows wanted to give way and I sometimes couldn’t do anything to stop them. Most of the time Mike would have to get Alfie for me a

As the weeks went by, I did find my arthritis was nowhere near as bad as before. Sometimes I'd get through a whole week without any pain. I didn’t even suffer with sickness; it was amazing! I felt like a new person and though I knew it wouldn’t be for long, it was still nice to have some relief from the aches and pains I usually had to endure. While there were days where I had some pain, it was nowhere near what I was used to before getting pregnant. Then suddenly it was time for my 20-week scan, and I was going to find out whether or not I’d be having another little boy or a baby girl! I can't lie; I LOVED the idea of having a girl. I suppose I was thinking, well I have a boy so it would be nice to have a baby girl too. I have always wanted one of each, but then I guess it’s not an ideal world and there are many people that don’t. However, don’t get me wrong, I was happy with either as long as it was healthy. That was all that really mattered. Nervous news and a few tears Du

One thing that really upset me about this path of medication ( methotrexate ) I was about to travel, was that under no circumstances was I allowed to get pregnant while on it. For a lot of people with this condition that would be OK, because some of them are at an age where they have had their children and aren't looking to have any more. That’s fair enough, but for a near 23-year-old who had not long had her first baby, this hurt. For as long as I can remember, a family has been one of my main goals in life. Having children was something I couldn’t wait to do. I felt I was put on this earth to have children and be a mummy. The last thing I expected was for something to come along and stop me from being able to do that. At 22, who would? There were alternative options, of course there always are, however methotrexate seemed to be the most beneficial medication for my health and the way I was feeling at this particular time. I just didn’t want to say no to taking it. It felt like

At the beginning of all of this I remember waking every day with the worst pain and stiffness in my fingers. It took maybe two or three hours for it to get better, but the pain was still there - it just eased a little. I’ve never experienced pain quite like it and I don’t think I’ll ever be able to describe it to anybody. I often wonder if we all feel the same in regard to the rheumatoid pain, or was it just so bad for me? I do know that as the weeks went by, I started to feel worse, so that some days I couldn’t keep my eyes open because I was so tired. No amount of sleep seemed to help - I just couldn’t catch up (I did also have a new baby so catching up with sleep was never easy, ha!). The days became a gradual procession of pain, so I would wake up and there would be something new that was hurting, and I just didn’t understand why. Some days I needed family members to help me with my new baby while Mike was at work. I mean imagine that - you have a new baby and you can’t even

About me Hey, I'd like to introduce myself. My name is Jessica, I’m 25 years old and I have a fiancé (Michael, 26) and two beautiful boys (Harry and Alfie). Harry is two and a half and Alfie is a one year old. It’s mad, I know...hard work but I wouldn’t have it any other way. We live in Derbyshire in our new, recently bought home and are currently doing everything we can to get by in these crazy times! I’m here to write my story about two chronic illnesses, Rheumatoid Arthritis and Fibromyalgia, both of which I live with daily. This blog is not about me asking for sympathy, but about the harsh reality of living with two medical conditions that are very much life changing. I’m doing this partly for my own mental health, because truth be told I haven't yet come to terms with having these conditions myself, but also because I would like to think that others living with the same or similar illnesses can relate to this and maybe get some kind of clarity that actually no, you are