New Headspace = New Challenges
Friday already, my head is still dragging along from last Friday, so much has happened this week its hard to know where to begin really and yet, I feel like I have had to stay horizontal for so much of it I have hardly done anything at all except I know I have crammed as much as conceivably possible into every waking hour.
Albinism I have been concerned for a long time now that I have Hermansky-Pudlak Syndrome instead of just OCA1 albinism. What is HPS? Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding. Characteristics : HPS is described by five major characteristics which may include albinism, platelet dysfunction, inflammatory bowel disease, and pulmonary fibrosis. How is HPS diagnosed? The current diagnosis for HPS involves a simple non standard blood test.
Yes this is true if you living somewhere other than the north east of England. I genuinely do believe now that this is the missing piece of the jigsaw for me and why no other intervention or treatments have worked on my system. I bleed for a tremendous amount of time even with the slightest cut, remember my reconstructive abdominal surgery of March 8th 2008? the wounds did not close or even start to heal until after the 18th December the same year, several months and weeks after I received them, they just grew bigger and bigger and bigger putting me through hours upon hours or torment and agony. It got to the stage that by the time the district nurses arrived each day I was shaking uncontrollably knowing that changing the dressings was a daily ordeal I just couldnt prepare myself for mentally as it hurt so much when they removed the dressings and cleaned the open gaping wounds on my abdomen. I used to have to lay back on the sofa but would virtually pass out when they finally got a new dressing on top of the wounds. I will always remember 2008 as being the year my life completely changed, learning how to live with pain took on new heights, breastfeeding through it all did surprisingly get me through those dark times I think because being so close with my little baby gave me something other than myself to focus on. I have a small cut on my thumb right now which happened when I was cutting up some salad about a month ago which is refusing to heal as well. The whole bowels issue, and tears inside, the whole immune system defects on top, yep I definitely think its HPS but can I get my doctor to help me? more bull, more waiting, more being given the run around, its really making me feel so dreadfully tired.
Dancing dancewear arrived for the kids last weekend, Imogen's shoes were the wrong type, the shop sent canvas ballet shoes instead of leather so as I was so utterly exhausted I gave them to her anyway. Worn once for half an hour in the studio on Wednesday evening the shoes were black by the time she brought them home to me in tears because she felt she ruined them. I popped them in the washing machine and now they look as good as they did new when they first arrived. I caved though and bought her a new leather pair as the exams are coming up in a couple of weeks and they get marked down if they are not wearing the correct uniform.
Lots of dyeing playing with colour at the moment, being able to use the garden has been a complete godsend because I can spread out things out there and leave the colours alone to develop. This week we had fun pounding up some walnut shells which I had saved from Christmas, more madder roots, Harvey loved using the old wooden pounder machine we made from wood with rocks in the bottom to ground the madder, he gets completely stuck in to mashing and turning bits into powders he really does. I found it so difficult to sit up so usually went straight from a standing to laying position most of the last few days but did manage to get over 2kg of fibres listed in MHE my shop which starting selling within half an hour of my finishing doing the first half on Wednesday. Nine sold on Thursday evening so tomorrow I will do more parcels, couldnt do them today I had a temperature so have spent the day in bed instead.
Salad plants have all sprouted, basil is growing well on the hall window cills and our pear trees are covered in pears. The main tree is the one the kids bought me for Mothers Day in 2007 so I just love that this year its completely covered in pears, its magical and beautiful all at the same time because previous years the pears grew in 2009 but only a handful, it produces ruit every other year only.
Hair yep, my hair is falling out at an even more alarming rate than it was last time this happened. Hormones are all over the place, Harvey didnt want to breastfeed for thirteen days then suddenly two days ago he fell off our bed in the middle of the night so in the morning he kept grabbing at one so I let him snuggle for about ten minutes. Nothing since then though although he has asked but was easily distracted and forgot about feeding and snuggling. I have noticed though, he randomly stops what he is doing and rushes over to me where ever I am in the house, throws his arms around my neck and squeezes me really tight, plus he spends a considerable length of time in the mornings stuck cuddling on my lap. Its lovely but usually means I cant move for at least an hour so my body is still behaving the same way it did when I breastfed several times in the early mornings.
Spinning I have managed to do spinning this week, more work on the Mysterions Batts singles, almost finished the first batt now which made me feel quite proud, its been very difficult to sit this week so any spinning I managed to do on my beautiful wheel Julius was a real heartwarming experience.
Knitting yep the secret uni project is going very quickly now, I have spent so much time upstairs this last few days I have managed two to three squares each evening which is fab. The loom-a-long of my pattern seems to be doing well although most people did not start theirs until this week so I am eagerly awaiting more finished object photographs which are always exciting.
House which brings me nicely on to my last subject of this post, the house. The other huge thing I am doing at the moment is deciding why it is that I want to move away from here so badly. Its confusing because there are so many wonderfully good things about this place but there are still only two main reasons for leaving, they are big reasons though. The first is my complete lack of independence. Living surrounded by large main roads with no pavement for the wheelchair means I have to be driven even short distances so I tend to not ask unless its a) really important like the doctors, hospital or some other appointment, b) I really can not stand to be inside the four walls a moment longer and am so stressed I look like I can commit murder in seconds when my husband gets home, or c) the kids are very restless and we need to get them out to the beach or park to run off steam. So the lack of independence is driving me crazy still and has done for a considerable length of time. The second huge reason is the lack of the mixed culture around us at the moment, I honestly believe my children, well the youngest four, will benefit from being around lots of families the same as ours with a mixed cultural household instead of just Geordie born and bred ones.
So I've been doing a lot of soul searching about these points and whether we should forge ahead and push the idea or not. I was surprised that my husband last weekend did say yes and to go for it when I diplomatically asked him about moving. It surprised me and kind of threw me for six because I had planned for days what and when I should bring up the subject but I need not have worried, it was when I started saying I felt my health would improve elsewhere with a new set of things and places to see plus a new set of doctors that he took my hand and said we should go for it then. I think its a positive step that we have at least discussed things together now and he is on side, he never really was before each time I brought the subject up each year a couple of times a year since 2006. How we implement this enormous change into our lives is something which requires an enormous amount of energy though, I will find it from some place so I can start to have talks with our landlord, its finding a tenant who will move several miles to live in our house which is the real issue at the moment. These past seven days I have found three possibilities, it feels like pulling teeth with thin easily breaking thread trying to get the info I need to set the balls in motion though which is frustrating me and is another thing weighing heavily on my mind causing me to feel tired. Next week I will talk to someone official I just didnt have the energy for that today as planned.
I'm laying back down again now, typing this entry has taken me a lot longer than usual as I have had to shift positions several times during typing so I am going to lay back down under my warm quilt again now and will try and update more regularly than every few days in the future, its just difficult at the moment that is all but I am trying to keep everything moving and ticking along nice and evenly I really am.
Albinism I have been concerned for a long time now that I have Hermansky-Pudlak Syndrome instead of just OCA1 albinism. What is HPS? Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder which causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding. Characteristics : HPS is described by five major characteristics which may include albinism, platelet dysfunction, inflammatory bowel disease, and pulmonary fibrosis. How is HPS diagnosed? The current diagnosis for HPS involves a simple non standard blood test.
Yes this is true if you living somewhere other than the north east of England. I genuinely do believe now that this is the missing piece of the jigsaw for me and why no other intervention or treatments have worked on my system. I bleed for a tremendous amount of time even with the slightest cut, remember my reconstructive abdominal surgery of March 8th 2008? the wounds did not close or even start to heal until after the 18th December the same year, several months and weeks after I received them, they just grew bigger and bigger and bigger putting me through hours upon hours or torment and agony. It got to the stage that by the time the district nurses arrived each day I was shaking uncontrollably knowing that changing the dressings was a daily ordeal I just couldnt prepare myself for mentally as it hurt so much when they removed the dressings and cleaned the open gaping wounds on my abdomen. I used to have to lay back on the sofa but would virtually pass out when they finally got a new dressing on top of the wounds. I will always remember 2008 as being the year my life completely changed, learning how to live with pain took on new heights, breastfeeding through it all did surprisingly get me through those dark times I think because being so close with my little baby gave me something other than myself to focus on. I have a small cut on my thumb right now which happened when I was cutting up some salad about a month ago which is refusing to heal as well. The whole bowels issue, and tears inside, the whole immune system defects on top, yep I definitely think its HPS but can I get my doctor to help me? more bull, more waiting, more being given the run around, its really making me feel so dreadfully tired.
Dancing dancewear arrived for the kids last weekend, Imogen's shoes were the wrong type, the shop sent canvas ballet shoes instead of leather so as I was so utterly exhausted I gave them to her anyway. Worn once for half an hour in the studio on Wednesday evening the shoes were black by the time she brought them home to me in tears because she felt she ruined them. I popped them in the washing machine and now they look as good as they did new when they first arrived. I caved though and bought her a new leather pair as the exams are coming up in a couple of weeks and they get marked down if they are not wearing the correct uniform.
Lots of dyeing playing with colour at the moment, being able to use the garden has been a complete godsend because I can spread out things out there and leave the colours alone to develop. This week we had fun pounding up some walnut shells which I had saved from Christmas, more madder roots, Harvey loved using the old wooden pounder machine we made from wood with rocks in the bottom to ground the madder, he gets completely stuck in to mashing and turning bits into powders he really does. I found it so difficult to sit up so usually went straight from a standing to laying position most of the last few days but did manage to get over 2kg of fibres listed in MHE my shop which starting selling within half an hour of my finishing doing the first half on Wednesday. Nine sold on Thursday evening so tomorrow I will do more parcels, couldnt do them today I had a temperature so have spent the day in bed instead.
Salad plants have all sprouted, basil is growing well on the hall window cills and our pear trees are covered in pears. The main tree is the one the kids bought me for Mothers Day in 2007 so I just love that this year its completely covered in pears, its magical and beautiful all at the same time because previous years the pears grew in 2009 but only a handful, it produces ruit every other year only.
Hair yep, my hair is falling out at an even more alarming rate than it was last time this happened. Hormones are all over the place, Harvey didnt want to breastfeed for thirteen days then suddenly two days ago he fell off our bed in the middle of the night so in the morning he kept grabbing at one so I let him snuggle for about ten minutes. Nothing since then though although he has asked but was easily distracted and forgot about feeding and snuggling. I have noticed though, he randomly stops what he is doing and rushes over to me where ever I am in the house, throws his arms around my neck and squeezes me really tight, plus he spends a considerable length of time in the mornings stuck cuddling on my lap. Its lovely but usually means I cant move for at least an hour so my body is still behaving the same way it did when I breastfed several times in the early mornings.
Spinning I have managed to do spinning this week, more work on the Mysterions Batts singles, almost finished the first batt now which made me feel quite proud, its been very difficult to sit this week so any spinning I managed to do on my beautiful wheel Julius was a real heartwarming experience.
Knitting yep the secret uni project is going very quickly now, I have spent so much time upstairs this last few days I have managed two to three squares each evening which is fab. The loom-a-long of my pattern seems to be doing well although most people did not start theirs until this week so I am eagerly awaiting more finished object photographs which are always exciting.
House which brings me nicely on to my last subject of this post, the house. The other huge thing I am doing at the moment is deciding why it is that I want to move away from here so badly. Its confusing because there are so many wonderfully good things about this place but there are still only two main reasons for leaving, they are big reasons though. The first is my complete lack of independence. Living surrounded by large main roads with no pavement for the wheelchair means I have to be driven even short distances so I tend to not ask unless its a) really important like the doctors, hospital or some other appointment, b) I really can not stand to be inside the four walls a moment longer and am so stressed I look like I can commit murder in seconds when my husband gets home, or c) the kids are very restless and we need to get them out to the beach or park to run off steam. So the lack of independence is driving me crazy still and has done for a considerable length of time. The second huge reason is the lack of the mixed culture around us at the moment, I honestly believe my children, well the youngest four, will benefit from being around lots of families the same as ours with a mixed cultural household instead of just Geordie born and bred ones.
So I've been doing a lot of soul searching about these points and whether we should forge ahead and push the idea or not. I was surprised that my husband last weekend did say yes and to go for it when I diplomatically asked him about moving. It surprised me and kind of threw me for six because I had planned for days what and when I should bring up the subject but I need not have worried, it was when I started saying I felt my health would improve elsewhere with a new set of things and places to see plus a new set of doctors that he took my hand and said we should go for it then. I think its a positive step that we have at least discussed things together now and he is on side, he never really was before each time I brought the subject up each year a couple of times a year since 2006. How we implement this enormous change into our lives is something which requires an enormous amount of energy though, I will find it from some place so I can start to have talks with our landlord, its finding a tenant who will move several miles to live in our house which is the real issue at the moment. These past seven days I have found three possibilities, it feels like pulling teeth with thin easily breaking thread trying to get the info I need to set the balls in motion though which is frustrating me and is another thing weighing heavily on my mind causing me to feel tired. Next week I will talk to someone official I just didnt have the energy for that today as planned.
I'm laying back down again now, typing this entry has taken me a lot longer than usual as I have had to shift positions several times during typing so I am going to lay back down under my warm quilt again now and will try and update more regularly than every few days in the future, its just difficult at the moment that is all but I am trying to keep everything moving and ticking along nice and evenly I really am.