You may have seen, a few posts back, that I began to write My story and I’m hoping that I can now finish this, well, until present day anyway.
So. In my story, I had moved to my parents house as I was struggling to care for my baby alone with my health needs and this had precipitated the break up of my marriage.
The pain I felt was horrific. I was so deeply sad for my loss of my marriage, and was grief and guilt stricken for my baby son. What was this decision going to do to him and would it possibly harm him? It took months and months of going through all the emotions before I began to come to terms and make peace with what had happened…
Us at about this time..
I stayed with my parents for a good 6-10 weeks before moving back into our home, and then began to refurnish and reorganise our life.
After my initial stay at my parents, I felt that I could manage on my own and so although my family came to see us and help us out with things regularly, my little man and I lived on our own and just got on with things.
My mum and dad immediately moved in with us and cared for us. It was a very long slog but for one reason or another it went from being for a month or two, to a year and now my poor mum is back.
Initially, I was anxious and depressed, had chronic back pain, issues with my feet and knees and was just at the beginning of my journey towards diagnosis.
By June, I had improved a little, had rested and recuperated as in the middle of the rheumatology investigations including a Nuclear Scan, and things were looking good. Mum was slowly starting to spend more time back at her own house with my dad (he’d moved out after the initial crisis as my house is quite small as he could sleep better and be back to help in the day) and we had a phasing out routine where she would sleepover one less night a week until I was independent again. Yay!! Week one went well and we were just entering week two of ‘phase mum out (!)’ and were having a family BBQ.
My sister wanted to bath little man who was now 18months old and so cute and funny, so I sat on the bathroom floor and chatted. BIG MISTAKE!
I went to move my body across an inch or so to let my mum come in and that was that. I screamed in agony as pain surged through my back and that was the end of my ‘so close I could almost smell it’ independence.
This began one of the hardest and most painful periods of my life. Physically, mentally and emotionally.
Thankfully, I have few memories of this time. I was mostly sofa bed bound on the living room but I really, really struggled with ‘losing’ my life again and the restrictions that were imposed on me by my condition.
In July I was admitted to hospital, on the rheumatology ward for a week and underwent MRI scans, ultrasound investigations and various other tests and was helped by the pain team to get on top of the pain. This meant a large amount of strong medication and thankfully I was introduced to my ‘go to’ pain relief, the TENS machine. It was amazing and really helps me to stay mobile at times.
From July to January was a big struggle. My meds made me feel very unwell, I had funny heart traces and twice was taken to hospital by emergency ambulance.
I had an issue with one tablet that wasn’t being absorbed after changing to a slow release preparation. This then lowerd the amount in my body which made me unwell and then when I realised and told the drs, they changed back to the original tablet and I ended up with an overdose. This was another 999 crisis.
The pain team that I was seeing as an outpatient decided that they could do no more for me and discharged me which felt terrible. I was in agony and couldn’t live my life nor care for my child independently and they were giving up on me. Thankfully my GP is amazing and she suggested a morphine-like, long lasting patch that is worn on your skin called Fentanyl. Wow. This helped the pain so much that I was able to mobilise and start doing more with my beautiful son.
In January 2014, little man turned 2 years old and although I had to scale back his original birthday party idea, I held a small and very busy tea party at home.
From then to now, August 2014, I have had good phases and not so good phases.
I have suffered terribly with side effects from my meds and when I finally found out in March that I had been offered funding for the facet joint injections, my GP and I decided to start reducing the medication in a bid to get my head back.
Doing this meant that every week or so, the pain increased and I had to get used to living with it, adapt and settle and then reduce again. Each time, my mobility reduced and I needed more help from my family. It seems that every time I get a glimpse of independence- be that just one or two days or nights a week, it’s gone in a flash. This has been one of the hardest things to deal and cope with, only trumped by the huge amount of guilt I feel about being a rubbish mummy and ruining everyone I love’s lives.
At the beginning of May 2014 it was my last rheumatology appointment. My consultant had very professionally offered me a second opinion before he discharged me with Hypermobility Syndrome and Fibromyalgia, two conditions that can not be cured nor treated with anything other than pain killers.
Although I didn’t and don’t want to be unwell, I did want to have an explanation for the pain and other symptoms that I experience that really effect my life.
It was at this appointment that I was diagnosed with Seronegative Inflammatory Arthritis. For the first time ever, I felt vindicated. I had felt, up to this point, that because no one could ‘see’ my illness, maybe the drs and everyone thought that I was making it up, that I was a hypochondriac? I even questioned myself. Was I doing this to myself? Was I rubbish mum? Maybe I just couldn’t manage as a single mum?
I’m not saying that all these fears and worries have disappeared but I do feel a little more at ease that this pain is not in my head. This has helped me to come to terms with what is going on. I’d like to say that this diagnosis is more for everyone else as in ‘now they can’t dispute my pain’ but it is also for me and it allows me to give myself a break. I still have fibromyalgia, that diagnosis hasn’t been taken away as I scored so highly on the pressure point test and I am slowly coming to terms with it.
This is where I feel bad. I know I have a negative thought process towards fibromyalgia and I feel sorry for others with this syndrome that may read this blog.
I had never heard of fibromyalgia until it was on the cards for me. I had no preconceived ideas about the illness and it’s causes it whether or not it was an illness that caused controversy with medical professionals about its cause and if it was believed to be a ‘real’ illness or not.
The reason why I began to beat myself up about its validity and whether I was just weak and was it just in my head or not, was down to what I read on the internet. The reason why I began to question my families, friends and drs thoughts on the ‘real-ness’ of this illness was because of what I read on the internet. I have been so so lucky that it’s validity has not been questioned by anyone (to my face!) including all my Drs and I know that in this case, I am one of the lucky ones. I cannot imagine the mental torment that would follow if I saw a dr who told me that it wasn’t a real illness.
I know that I should not feel better to have the arthritis but it gives me hope that with medication and treatment, I may start to feel a little bit more like my old self. How stupid is that?! I still have fibromyalgia! I can’t change that. In essence, I am worse now that I have this diagnosis. I have fibro and arthritis. Double whammy! (Oh and Hypermobility, too!) So why do I feel more hope? Purely because I feel as though I have escaped the fibromyalgia diagnosis and all that comes with it. How stupid is that? I know that I feel this purely because of the negative things I have read about fibro and the fact that there is no cure or effective treatment. How stupid.
So now my story reaches present day.
I am confined to bed for most of everyday. It is hoped that this is due to getting used to the arthritis medication, Sulfasalazine. I am weak in everyway and my head is mush. My blood pressure is high and there’s no explanation for it.
I try to do an activity with little man everyday such as the park or swimming or just playing at home but the rest of my day is spent in bed. It is really upsetting me at the moment and I cannot tell you how guilty I feel for my baby and my family (predominantly my mum). I am ever hopeful that I will improve and get my life back. That one day I will live independently. I will be a proper mummy and I will be able to do the things I want to do with my son. I won’t have to stay at home or rest in bed.
I keep hoping.
Thank you for reading. Click here to read part 1