Those of you that know me will be fully aware of my love for a good scare! (Strictly in a watching film from the comfort of my own home capacity.) So when American Horror Story was added to Netflix you’d think I would be jumping for joy and cramming as many episodes as possible into one sitting however I hate to admit I was late to the party with this one!
For some reason my head was not turned initially, perhaps it was the lack of advertisement in the UK. I have to admit that I rely largely on two things when making my Netflix selections:
- The image icon
- The limited description
Usually I can identify whether this is something I want to invest time in from these two factors, however there have been occasions where this system has failed me and this is one of those times. In fact I’m hesitant to add that I had access to this tv show via Netflix for upwards of a year but only sat down to the first season last month!!!Read More »
Well that time is upon parents across the nation where we are challenged with the almost impossible task of entertaining our children 24 hours a day 7 days a week! Lately my joints have been stiff and painful not to mention I have been getting over numerous infections so to say I have been dreading the holidays starting is an understatement.
I hate having to say no to my child due to my illness I feel like it robs me from enough freedom I don’t want to take away from him too. He is almost 4 years old but I couldn’t ask for a more understanding and compassionate child. He of course doesn’t know the ins & outs of my condition but he does understand that my joints are painful and he does offer to help as much as he can. Even though he is understanding it is still heart-breaking to see his face fill with disappointment when we can’t do something because I am having a particularly painful day.
Last month he got his first bike and he took to riding it like a duck to water. In the mornings he sits on it in the kitchen and cleans it and takes such pride in it. One thing he wants to do everyday is go for a bike ride but walking any distance can cause pain in my joints however as I have been feeling marginally better I have been taking him out for short bike rides making sure I rest along the way and I treat myself to an Epsom bath in the evenings. I often park myself on a bench and watch him ride up and down the cycle path in front of me.
Believe me I am paying for doing even the shortest of walks but the expression of happiness that overwhelms him makes it all worth it.
I am sorry that I have been AWOL of late. Unfortunately my body has felt like I have hit a wall at 90mph and it has been extremely unforgiving. So I have been concentrating on trying to rest and relax and give my body a real break for a change. I have been sitting on a few blog posts which I will be posting in the near future I just haven’t felt up to it physically or mentally but more on that later!! As always thanks for reading guys! 🙂
I try to remain positive. I am continually reading, hearing and occasionally even preaching myself that positivity and having a positive attitude helps. The thing is that positivity wont cure this disease. It wont give me my mobility back or take away the excruciating pain I feel daily. Positivity cannot replace the lost days where I was unable to play with my own child.
I am feeling somewhat overwhelmed today. My friend’s daughter has just turned one and it feels like only yesterday when I held her close breathing in her newborn scent. I’m unsure where the year has gone. My partner, Oliver was always told by his Granddad that when you get older time goes much faster. I can truly empathise with that feeling today. When I am in pain and nothing seems to be helping I long for the day to be over so I can lie in bed and sleep it all away. When I dream I am no longer in pain. I am no longer sad. I am simply free. Free from this disease and the grip it has over me.
But then I wake up and it’s just another day gone. Another day of my life I wont ever get back and still a day that I wasted. I feel so worthless, life is precious and yet I am wasting those days. I think back to my friend’s daughter and I think of how many of those days between holding her tiny body to today that I have wasted. Then I think of my own child and the three years that have passed and the days wasted are adding up. So I set myself a goal that tomorrow I will not waste my day I will be more positive.
I am luckier than most because I am blessed to have my partner Oliver who is able to ground me. When I feel so tired with life I could give up he carries me until I am strong enough to carry on. He makes me list all of the positives in my life and although sometimes it feels like there are none the list is quite extensive. As we do this exercise together the fog begins to lift slightly and I am able to see that although sometimes it doesn’t feel that way, in fact the positives far out way the negatives. Positivity doesn’t free us from the shackles of this disease but sometimes it is what we need to continue our fight.
So even though sometimes when people tell me to ‘be positive’ I want to punch them in the face, they are right… in a way.
This week has been my 6th week on the biological drug Enbrel for my Psoriatic Arthritis and Psoriasis. So far I have seen some improvement in my joints and the swelling is reducing however with the good the drug is achieving comes the bitter side effects. Nausea has been the worst one for me and I think that today I have pulled a muscle on the left hand side of my stomach from all the retching! The change in weather has caused some discomfort in my joints too but that is sadly part and parcel of living in Manchester. Perhaps I could get a prescription for a holiday in Spain?? Who am I kidding it is difficult enough trying to get the medications I really need! Despite the side effects causing me to feel sorry for myself and become consumed with darkness I am planning on sticking Enbrel out for the long haul. It has taken me a year of agony to finally get this drug not to mention the several years of discomfort beforehand so anything giving me even a glimpse of my independence back is well worth some annoying nausea!
Since the first symptoms began of my Psoriatic Arthritis I have not been myself and for that I apologise.
To my soul mate I know you didn’t sign up for this, being a full-time carer before we have even reached 30. I am sorry that my body is failing me making even the simplest things hard. I’m sorry that when I am in such extreme pain there is nothing you can do, I know it saddens you to watch the person you love in such agony. I am sorry that sometimes the house isn’t clean or I have fallen behind on the washing and although I know you don’t care about that, I still feel worthless I still hate myself for putting you through such struggles. I’m sorry sometimes it’s all too much and I cannot cope. I’m sorry for having thoughts of giving up. I’m sorry I can’t be stronger. I am sorry the drugs may make me infertile and I will no longer be able to carry your children. I’m sorry I can’t always see the positivity or silver lining and I let the darkness consume me. I’m sorry we have to face this.
To my son I am sorry I can’t always play your favourite games when you want. I’m sorry some days I can’t get dressed or do more than get out of bed. I’m sorry I’m not the Mother I would love to be but know I couldn’t love you more even if I was perfectly healthy. I’m sorry sometimes you have to see me cry or struggle and even see me become frustrated. I’m sorry for the sunny days we spend in hospital waiting rooms or GP surgeries. I’m sorry sometimes I am reluctant to snuggle down on the floor next to your bed to read your bedtime story it’s just so painful to get back up. I’m sorry I may not be well enough to give you a brother or a sister. I’m sorry sometimes the drugs make me so sick we have to change our plans for the day.
To my family I am sorry I can’t be there to support you through your own struggles.I’m sorry that I have to take time out to concentrate on myself and my own journey. I’m sorry I can’t let you in, I just cope better cutting myself off. It’s not that I don’t care about you and your life it’s just sometimes even just breathing is a challenge. I’m sorry if that’s hard to understand and its frustrating. I’m sorry I am letting you down.
To my friends I am sorry I sometimes cancel plans, it’s not that I don’t want to see you it’s just sometimes its too painful. I’m sorry that I hide away and keep my struggles to myself it’s just how I cope. I’m sorry I haven’t always been there for you I know it makes me a bad a friend.
Finally to myself I apologise for being so unforgiving and hard. I’m sorry that your life plan has changed and the future is unclear. I’m sorry you may not get to carry that second child or ever ride a horse again. I’m sorry I can’t change this.
I’m sorry.. Just sorry.
Since the age of 16 I have been genetically blessed to have inherited psoriasis. I say that with sarcasm because psoriasis is a cosmetic nightmare and although there are worse things to have it comes with a lot of metal and emotional baggage. Psoriasis is a skin condition causing dry patches of red flaky skin. It is a chronic long term condition and although it can ‘come and go’ with flare ups and recessive periods it usually sticks around for life. Its like when you graze your arm for example your body naturally repairs the skin by producing new skin cells the difference for psoriasis sufferers is that this happens on healthy skin with no graze needing to be present. Commonly it occurs on the elbows and knees but it isn’t limited to these places I currently have several patches all over my body ranging from the circumference of a pea to the circumference of a large orange. The worst are the ones on my face as they cannot be covered by clothing and although after trial and tribulation I have finally found products and make up that provide almost flawless coverage (I will write a separate post for those interested.) it makes leaving the house without makeup for those menial tasks like grabbing milk or the nursery run in the morning much more emotionally challenging. For lack of a better term I am quite comfortable in my own skin however it is human instinct to judge. Some people stare, some people comment or ask questions and others become paranoid that they might catch it which you can not by the way. I have seen on more than one occasion parents pulling their children away from me in blind panic and my psoriasis is quite mild in comparison to some. As i have mentioned it isn’t contagious it is in your genetics and DNA I inherited it from my Father and Grand-Father and sadly my children may get it. Overall though bar the emotional and mental impact it has it can be managed with steroid creams and other treatment and if you can get over being self concious it isn’t too bad.
Things became a lot worse for me though after the birth of my son almost 4 years ago. Suddenly I had this awful pain in my knees and I assumed it was because I often changed and played with my son on the floor. It felt although my knees were weak and getting up could sometimes be agony. I put it down to being much heavier in weight and after carrying a baby for 9 months that has to take its toll on your body. I spoke to my GP though who I am sad to say fobbed me off instantly putting the pain down to the cold weather. I struggled on and didn’t question the diagnosis life with a newborn was far too busy so I didn’t get around to visiting the GP again even when the pain persisted through the summer. The following year though I noticed my fingers were swollen and itchy. I woke in the middle of the night with a pins and needles sensation in my finger and when I looked the circulation was being cut off due to the swelling on my finger around my ring. I had to use copious amounts of moisturiser to prise the ring off my finger and the knuckle was extremely painful to touch and move. I should have gone to the GP immediately after that but life overwhelmed me and I kept putting off making an appointment. It was a month later when i finally got around to seeing the GP and they assumed I had broken the finger and needed an X-ray. When the results came back it concluded that there was no break but there was some kind of inflammation on the joint and I needed to be referred to a specialist in rheumatology. In Manchester the waiting list for this department is extensive and it meant waiting almost 6 months to receive my first appointment. My condition escalated during this time and although the finger that was originally swollen calmed down several other joints became inflamed and painful. Walking became difficult, writing or holding a pen was a challenge even opening bottles like milk was impossible. I was diagnosed with psoriatic arthritis and extension of the psoriasis causing inflammation of the joints.
At this point i was prescribed an extensive amount of pills for pain management ranging from sleeping tablets and antidepressants to morphine. Although the condition affects me physically it was the emotional and mental impact i wasn’t prepared for. There is nothing like your toddler begging you to play and having to decline because it is too painful to even move. Some days are better than others but my whole life plan has changed 5 years ago i was riding horses and now the prospect of even mounting a horse makes me wince in pain. I have received my fair share of counselling and cognitive therapy to help deal with the emotional aspects of my condition and i am getting there but there are of course challenges i am still having to face. This is a condition i am stuck with for the rest of my life and i never imagined having arthritis in my early twenties. The treatments are aggressive and come with an abundance of nasty side affects but if they give me at least some quality of life back it will be worth it. My journey has just begun but I will keep you posted on the future.
Thank you for reading 🙂