Ups and downs.
Since I last blogged I have had a very up and down few days. It has been a very emotional roller coaster that I have felt unable to get off. My week has been so busy with various appointments too that I have been exhausted. I have just woken up from sleeping 24 hours straight I was that tired.
Monday was the results day for Evie's ADOS test. For more information on this and autism testing see previous posts. So the results from this were what they call a false positive. She does show some autistic traits but doesn't have ASD. Obviously this was a relief but this was short lived as I feel sad that no one has been able to tell me what is wrong it is so frustrating. I want to be able to help Evie more but at the moment I cannot get the help. She is being referred to CAMHS - Children and Adolescent Mental Health Services. The doctor said she was a very interesting and complex case. They recognised her intelligence level and think that her issues revolve around her being so highly intelligent. She said the higher their intelligence they are often the most complex of children. So no result and another waiting game. It has taken a year just to be told she isn't autistic, back to waiting for yet another referral now.
Tuesday I was back at the hospital for a Gastro team. They told me they found a hernia and reflux issues on my endoscopy which I already knew. He then said they found no evidence of celiac disease or pernicious anaemia. They cannot explain my B12 or other vitamin deficiencies that way. It was basically a useless appointment to me I could have been told this at my own GP instead of having to go across the other side of the city to be told this. They have now signed me off. They did say that some of my Fibro meds are not helping my stomach which I already know and can I change them. Thing is it's not that easy. They also gave me the fat talk again. This really annoys me. It is so difficult to lose weight when you have fibro as you cannot physically get to the level of exercise you need to burn the calories. I also had to educate him that I am infact of meds that increase your weight and that I would love to be thinner and if he has a magic wand to let me know!
Wednesday I have a pelvic scan. They were checking my bladder, ovaries womb etc. I still have a cyst on my ovary but the scan didn't show much else. They also checked my kidneys when I mentioned having another urine infection and my renal reflux. They often check my kidneys for damage but at least this one did it at the same appointment which saved me some time and extra appointment. So I will prob have to have another gyne referral as my pain is probably to do with my Adenomyosis or Endometriosis.
Having just woken up from 24 hours of sleep I am annoyed that I still feel exhausted. I am beginning to wonder if I have ME/CFS on top of the Fibro as I often can crash out for anything up to 72 hours at a time. This is not good when your a single mummy ans so it means I have to rely heavily on the support of my mum. They say pace yourself but it's not easy when you have a lot going on and you have to go to appointments so then you always seen to suffer a backlash.
I feel full of questions about things at the minute and this week has only served to provide me with more. I just want things to be more simple and start getting answers to some things. I see the Rheumotologist again next week so they will get some questions fired at them.
Back to the roller coaster.
So I think the above explains some of why I am on this emotional roller coaster at the minute I do however feel I am more on a down again. It can be easy for others looking in to say keep positive but when your constantly exhausted and in pain it is not always easy.
Having a chronic condition can often make you very lonely and isolated and for a sociable person this is one of the things I find affects me the most. It seems as if the world goes by at 100mph and at times I am an outsider looking in on it. It's not that I don't want to be apart of this it's just that when you are limited on what you can do you often get left behind and forgotten about. This is really a hard subject for me to talk about as I actually have to admit the fact that I am lonely. I do think I need to discuss it though as I want to highlight what life is really like and I think a part of that needs to include the emotional side to living with a chronic condition. It can often be all too easy to talk about the physical side as pain is something people can relate and understand, but talking about the emotional side of it can often be embarrassing.
I do feel lucky in the fact that I have my children and so they are good company and fun but as all parents would say you often need adult company and stimulation too. Loneliness is one of the hardest things for myself to deal with. One of the things about going on holiday for me is that I don't feel lonely. I am surrounded by people and can actually interact with them. I think this is one of the reasons why the loneliness has hit me so hard this week is the fact that we have come back from holiday.
I miss seeing people in the real world. Most of my friends are now virtual friends and I would consider them to be closer to me than people in real life. Talking to people online seems to break down a lot of the barriers. Having virtual friends with the same condition as you makes them more understanding and sympathetic to what you are going through. However, it is not the same as having people in real life.
One of the things that happened on holiday was that I was given a hug. Now I know this sounds really silly but I can't remember the last time someone gave me a hug bar my children. Well I nearly burst out crying which is very unlike me. It's funny really how the simple thing of a hug can have such an impact. I mean for God's sake it was only one of the fun stars giving me a hug goodbye on our last night but it got me thinking. This condition can make you so isolated and lonely and I would hate to think how someone who doesn't have children or someone special in their lives would feel. I mean I don't normally get that emotional about stuff but it has had a great affect on me.
I have finally had a call back from the lady who runs the expert patient programme for people living with long term health conditions and hopefully I should be starting a course near me very soon. She said mid November hopefully. This will be good for me as it is only local so something I can manage to get to and it means I will be able to get out and meet people have some company and interaction with adults.
I also managed to get a bit of my Christmas shopping done this week.Managed to get some good bargains in some of the sales. I have to get it done when I am feeling up to it as you never know when your going to have a bad flare so better to try and be organised Spending money always seems to help when you are feeling down. Why can't the NHS provide an all expenses paid shopping spree for us all that would cheer us up in the short term?!