This time five years ago I was sitting on a hospital ward with Graham waiting to hear news of Star who was in Tramadol Order Uk
This was the beginning of the end of an
Three more trips to A&E and eventually they listened to me and did a scan. She was admitted immediately. One of the discs at the top her spine had twisted out of place. She was give a bed and some muscle relaxants, when they didn’t work we were told they were trying to find a traction bed. We were allowed home for the weekend with Star in a neck collar. When we arrived back on Monday morning the traction bed had been found and it looked like some kind of Victorian torture contraption. Thankfully they decided against using it and Star was sent home again.
Sadly, it didn’t stop there though because they started small and worked their way up with treatments. Physio made her worse, medication made her worse and eventually she was taken to theatre for a manipulation to put the bones back into place. She came out of theatre in a halo, which is not as nice as it sounds. A metal ring is screwed into the skull and it has four long poles which are attached to a plastic vest. It cannot be removed unless by a surgeon.
It was horrific, but after a few months we were quite used to it. My little Star was just eight years old at the time.
She even had to wear it in bed.
It Didn’t Work
As soon as the halo was removed in march 2014, it was obvious that it hadn’t worked. Star’s neck flopped back into it’s former abnormal position and she was back wearing a collar. We were so down about it, but Star took everything in her stride.
Then we heard that she would have to be fixed with screws and titanium plates, it was the only option. This involved two operations, the first was on 9th June 2014 where they manipulated her again and replaced the halo. Then two days later they took her for her plates and pins. The bone had deteriorated so much they had to do a bone transplant from her skull. The operations took hours and all we could was wait and pray that she would be okay. While staying in hospital we had been witnesses to two child deaths on the ward. It really is a horrible situation to be in and I wouldn’t wish it on anyone.
Star was back on the ward at 7pm, half her head shaved and the halo in place for another three months.
A Life Time Ago
In one sense it feels like it was a life time ago, so much has happened since then and my little girl has grown into a young woman of almost fourteen years. In another sense I can remember everything about that time like it happened yesterday. It is difficult to even begin to imagine the emotions you go through while waiting for your child to be returned. And the hospital was like a second home, we didn’t go to outpatients for appointments, we just went straight to the ward. We knew everyone, and everyone knew Star.
Now my girl barely remembers it all now, well apart from the nice thing like the toy room on the ward. She remembers her home tutor that she had for a whole year while recovering, and not having to go to school. Surprisingly has forgotten about the halo she wore twice. She even forgot about her scars, well she can’t see the one on the back of her neck or head. She has noticed the ones on her forehead but they are disappearing well.
The Future for Star
During all this time it was discovered that Star had a connective tissue disorder and she was eventually diagnosed with Elhers Danlos Syndrome. Since then she has been seen by a geneticist who believes she may have a different connective tissue disorder and is convinced she hasDiscount Tramadol Online There are more tests to be done because the test for Marfan Syndrome involves the febrillin gene and Star doesn’t have that. But, there are 3000 different mutations of the gene so her DNA is being tested again. She is also having her chromosomes tested as the geneticist thinks there may be a connection between her physical disabilities and her autism.
In the meantime, Star is working hard at school and will be doing her GCSE’s next year. She gets a lot of help and support and the school, although mainstream, are very understanding. I do have hopes that her future will be fine so long as she gets the extra help after leaving school.
I worry so much about my children, especially now that I am sick. While Star was ill I was running around like crazy, taking the other two to school and nursery and the older kids to college. Taking Star to her appointments at the hospital, or even taking it in turns to stay with her overnight. I was fit and able to deal with getting up several times every night. I managed that, but if any of my children needed me like that now I would not be as much help.
It’s hard to imagine how different life was five years ago, but that day changed everything and most probably saved my daughter’s life.
This is a photo of a river taken on our recent trip to Wales.
Do I change like a river, widening and deepening, eddying back on myself sometimes, bursting my banks sometimes when there’s too much water, too much life in me, and sometimes dried up from lack of rain? Will the I that is me grow and widen and deepen? Or will I stagnate and become an arid riverbed? Will I allow people to dam me up and confine me to wall so that I flow only where they want? Will I allow them to turn me into a canal to use for they own purposes? Or will I make sure I flow freely, coursing my way through the land and ploughing a valley of my own?”
― Aidan Chambers, Buying Tramadol Online Uk
I love this quote,
Yesterday was a bad day, but I don’t want to call them bad days, it sounds so negative. Suggestions given to me on Twitter were, rest days (well, I
They both sound better than
Another photo from Wales, I’ve not been out this week and I’m missing fresh air and views. I rarely get views like this, Which I took outside the Buying Tramadol Online Forum where I stayed.
Out beyond ideas of wrongdoing and
there is a field. I’ll meet you there.
When the soul lies down in that grass,
the world is too full to talk about.
Ideas, language, even the phrase ‘each other’
doesn’t make anysense.
Maybe I need to forgive myself for being sick. I get so angry sometimes at myself. It’s so frustrating that I can’t do the things I used to do and then I take it out on others, blaming them for not doing it.
I need to go into a field and lie down, just look around at the beauty of nature and forget the world and
You can read more about my time at Buying Tramadol In Mexico.
Hello and welcome to the home of Word of the Week, a nice and simple weekly linky, with everyone welcome to pop by and share. The idea of the linky is to reflect back on your past week and share it with us. It’s great if you can sum it up in a word or phrase, hence giving us your Word of the Week.
I’m not totally strict on using just a word or phrase but please try to stick to the theme of summing up your week.
There are not too many rules with this linky, just remember to read at least another couple of posts in the link up after adding your link. I will read and comment on all posts and tweet them out for you. I also have aTramadol Online Mastercard devoted to Word of the Week and I will add posts toOrder Tramadol MastercardPlease add the badge below to your post so that others may find us and join in. If you comment or tweet then please use the hashtag #WotW
Word of the Week is open from 6am on Friday Morning to 12 noon on Monday. Plenty of time to join in!
If you are unfamiliar with the Word of the Week linky then please feel free to ask any questions. New linkers are always welcome, we love to hear what you have been up to in the past week.
MY WORD OF THE WEEK.
I left you last week while I was at a funeral. It went
This week has been quiet. I’ve not
The kids went back to school on Monday, so I figured it would be a good time to decorate the living room. So far, we have one painted door! I’m so frustrated. If I was able do the decorating myself, I could do a room easily in a few days. I’ve done it many times before in the past. My Mum would do all her own decorating and I learned a lot from her. Now, I can’t bend or stretch and I get tired easily.
If it’s not done by next week, I’m considering paying someone to come in and do it. It will be frustrating spending even more money when there are four adults in this house.
Other frustrating things have been my inability to find a new crochet project I can enjoy. I finished my baby blanket last week and now I’m at a loss at what to do next. I keep starting things but not wanting to carry on. And I have a huge book pile to read through, not audio books, so I can’t just plug my earbuds in and get on with it, but actual books. I love reading but I can’t do so for
Here’s the badge if you can get it to work, even this frustrates me sometimes, it works for some but not others!
Instructions: Select all code above, copy it and paste it inside your blog post as HTML
Now, it’s your turn, come and tell me what you’ve been up to this week
I’m going to try and use this month’s prompts from Sheryl at Cheapest Tramadolto express myself. I often gloss over a lot of the effects of my illness, in particular after I was accused of moaning too much. I’ll explain more as we go along.
I use an app on my phone which prompts me to say how I feel throughout the day. It’s called Cheapest Tramadol Overnight and you can set it to reflect the things that affect your life. I find myself repeating things over and over and my most common moods and feelings are ‘overwhelmed’, ‘stressed’ and ‘pain.’ It pops up, and I click to let it know how I’m feeling, a constant reminder to let me know just how awful it all is. The idea was to keep a record so I could be more honest when I visit the consultant, it’s easy to gloss over the awful.
However, always the optimist, I tried to inject some positivity to my days. I added a daily prompt to think of something I’m grateful for. There is always something, whether it’s just a nice cup of coffee made by my daughter, or a gift in the post that I wasn’t expecting. It has made a difference to my monthly chart by this little repeating high each day. It’s not huge things on this mountain I’m climbing, but the little spurts of joy I have to grip onto.
I’m always wondering whether all the drugs I take are helping me or not. The easy way to find out is to miss a couple, but this just proves that I can’t do without them.
I also wonder if people actually understand at all what I’m going through. My family seem to think that I am getting better, when I don’t actually feel that at all. Maybe they are in more denial than I am? I find that connecting and speaking to others who are chronically ill makes me feel less alone in my suffering. It’s hard to talk about suffering, no-one really wants to hear how difficult life is all the time. No-one really wants to know because they don’t know how to react and there is only so much sympathy they can give. It’s not sympathy I want though, in fact it makes me squirm a little. What I would really like is empathy and understanding.
In reality, though, no-one understands the suffering of another person, it’s all relative. If you’d have said to me four years ago, how would you feel if you were in pain every day and unable to walk, I’d have had no idea. It’s no wonder that no-one else understands.
I have pondered over this one quite a bit. I could say how I’m turning into a statue, but I really hate that term. Stiff person syndrome is often called Tin Man syndrome because it’s sufferers turn stiff, but this seems to be a different experience for those with the condition. I have a particular form of the condition, progressive encephalomyelitis with rigidity and myoclonus. I’ll explain each term in turn;
- Progressive: it will get worse
- enchephalomyelitis – swelling on the brain and/or spinal cord
- rigidity – becoming stiff or ‘rigid’
- Myoclonus – jerking, spasms, involuntary muscle contractions
I’m not turning into a statue, but each part of me can become stiff, either for a little while or permanently. Medication can help, but there are certain muscles that have been stiff since my first attack 3 1/2 years ago and they haven’t improved. The IVIG has helped with the myoclonus, I rarely jerk now, which makes it a little more comfortable being around others.
The hardest part is getting people to understand. When the condition is so rare not even the doctors understand what is happening to me, how am I supposed to explain it to others. I’m told constantly by family and friends that I look like I’m getting better, when I know I am getting worse. I can only assume that I am getting better at dealing with it all.
Well, actually, I know I am getting better with dealing with it all. I used to panic when the pain in my chest got so bad I could barely breath. Now I just relax and deal with it, I know it passes eventually. I would panic when my body would go into completely stiff spasms and render me paralysed, now I just get on with it. It hurts, but it doesn’t last forever. I used to freak out at the fact that I was constantly in pain and it just wouldn’t stop. Now I just accept it and carry on. And sometimes I carry on a bit too much and end up getting myself into such a state that all I can do is nothing at all. When life throws this kinds of crap at you, all you can do is get on with it.
What am I desiring? Well, it could be a cure, a medicine that works and makes me feel good again. I could desire some real understanding from someone else, not sympathy, but empathy and the right kind of care.
Or maybe I could desire the ability to walk again and get on with my life like before, to run around with my kids, to drive my car, to go out alone, to go back in time and stop this condition from taking everything away from me.
What if I could keep it simple and desire a lovely holiday with my family, the ability to sit on the beach and enjoy some fun with my children. It’s the simple things that keep me going.
Or an evening at home when everyone is in a good mood and chatting and the television gets drowned out. And there is laughter and joy and for a while the pain really doesn’t matter at all.
Linking up to Sheryl from Coupon Code For Tramadol Online, for June’s Link Up Party
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