Chronic Illness Health

My story pt2

 mystorypt2Hello lovely people,

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.

 Back home and enjoying some snow..


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.


 Our first ChrismasIn February of the following year, just after my sons birthday, I became physically exhausted and very ill and began to experience terrible anxiety and reached the point where I just couldn’t go on. My little man wasn’t sleeping through but on top of this, suffered from one or two ear infections a month and the raging temperatures that come with and also croup which is worse at night on a regular basis. In the end I was diagnosed with Post Natal depression (read here)

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.


 Swollen, puffy and feeling rubbish.. 

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.




 In hospital with my favourite visitor and trusty TENS machine. 

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.

 A butterfly world in a wheelchair and swimming with crutches! Boy had I piled on the weight with meds and immobility! Christmas meant a fair and feeding reindeer. Although I hate the way I look, I am glad that we have the memories.Throughout this time, my mum, dad and sister patiently gave up their lives to look after us both and I can’t thank them enough.

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.

2nd Birthday and the Fentanyl Patches on my arm.

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



    1. Lennae, first of all, apologies for taking so long to acknowledge your comment.
      Thank you. I’m try to be as positive as I can and fingers crossed, this will all just be a bad dream, in the not so distant future. Hannah x

  1. This is such an inspiring story. I’m sorry you’ve had so many health problems but it’s amazing that you’ve kept going and stayed positive for your gorgeous little boy. I hope you start to feel better soon xx

  2. I’m so blessed by the people that have taken the time to read my posts. Tiny Tang. I truly do not feel inspirational. Thanks for the best wishes- I start a new treatment tomorrow so fingers crossed x

  3. Hannah, you inspire me. I wish you all the best for your recovery and your life with your beautiful son. I really look forward to reading more from you.

    1. Thank you Jessica, I’m so sorry that I somehow missed this comment, I really appreciate you taking the time to comment. I’ll check out your blog now. I hope you’re enjoying it.

  4. Hannah,

    It sounds like you have been to hell and back and I am so sorry for you. I hope things are on the up now. I really do. I don’t think you should feel guilty about your parents having to help you. I sometimes feel guilty about relying so heavily on my parents but I know they wouldn’t have it anyway. You would go to the end of the world and back for Angus wouldn’t you? Well, they are doing the same for you.

    I really hope things are better now and you are starting to re-build your life. On the positive side you have a wonderful son. Not all of us are this lucky.

    Take care. xx

    1. Thank you Single Swan. You are right, I thank my lucky stars for my son at every opportunity. I try not to worry about the help I receive and as my mental health has improved, I am feeling less guilt. My family’s lives have revolved around mine for sometime though which doesn’t feel fair

  5. Hi Hannah, I really hope things get better for you it seems so unfair that you should suffer in this way 🙁 I hope that you will be able to do more things with your little man, something I take so much for granted. I am not sure I would have coped as well as you have with the same issues. Look forward to your happy ending, I am keeping everything crossed for you xx #FeatureFriday

    1. Thank you so much. Things have improved to a point as these posts were written some time ago but I thought would be great to share as I was introduced as the new link co-host. I have ups and downs but I will get there x

  6. I just read both parts of this and I think you’re amazing for being able to carry on – I think it would have just totalled a lot of people. I can’t imagine how difficult it must be to live with such chronic pain every day.

    I know what you mean about fibromyalgia though – I had a bit of a break down and was diagnosed with fibro and CFS when it became clear it was more than just depression going on, and you kind of feel like a fraud because they are so disputed. I read a lot of Victorian fiction, and the only way I could really describe what was wrong was by likening it to the ‘nervous exhaustion’ the tragic heroines were always suffering. Turned out to be pretty accurate as it’s basically just the modern term for the same thing… #findtribe

    1. Oh I’m sorry that you have it too Jessica. How do you cope or are you feeling any better? Thank you for your kind words x

  7. Hey. I have fibromyalgia too. Just because your GP doesn’t have a cure doesn’t mean you’re never going to get better/improve. Doctors only know their field and that is mostly tests to diagnose disease and drugs to treat symptoms. They aren’t usually experts on nutrition, plus fibromyalgia is new to them so they don’t fully understand it and so they dismiss it as incurable rather than admit to not having it all figured out. You should take magnesium malate, d-ribose, creatine, 5-htp and there are other things too. It’s caused by long term stress and anxiety which messes with your nervous system. You can get better hun. Don’t lose hope. Hope is a major driving force for improving your life.

  8. Just by fighting, you are a strong woman. You’re doing the best you can in your circumstances, and always have your son’s interests in mind. You ARE a proper mummy! You’re there for your son, and when he’s old enough he will understand why you couldn’t play or do physical activities with him as much. Thank you for sharing your story

  9. I am so sorry you have dealt with all your pain and suffering while trying to live a good life with family. I was dx with the same joint hypermobility and fibromyalgia and had 3 c-sections. My quality of life is often very low. I am forever trying to find an educated healthcare professional who will have experience with all of this. I tend to beat myself up on a daily basis about is this real or not—when I try to do some normal things, I then suffer. Fortunately and unfortunately my husband of 30 yrs is a triathlete. How annoying is that! Lol! I feel like I could write my life story about all my physical ailments, accidents and procedures…throwing in life with 3 boys and a triathlete husband for some flavor. When my own problems get so much in the way of happiness it is difficult to be social and put this on anyone. Many people would be very surprised to see what’s really in my “baggage!” I wish you the best and hopeful for a cure within our lifetime. Enjoy your son and family and be good to yourself.

    1. First of all, thank you for taking the time to reply to me. I’m sorry that it’s taken me so long to reply back. I’m so sorry that your quality of life is so low – I think mine is too but thankfully, my mind doesn’t go back to the places that I used to be in – reminding me of all the things that I used to be able to do. It’s a magnificent trick! SO whilst I am quite happy with my life, if I really sat and thought about it, I bet I would realise its pretty rubbish!

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