Sunday, 31 July 2011

Just a short update!

It's been a while since my last blog, and though I'm struggling to get online for any length of time right now, I just wanted to post a short note letting you know I'm still alive, lol! I'm not going to do the whole apology for not blogging for ages thing, lol - but I am sorry that so many of you have left me such lovely comments and emails which I've yet to be able to reply to. I valued them so much - and don't give up on me - I absolutely will respond as soon as I'm able!!

There's been quite a lot going on here, which I can't go into as I'm making myself be brief, but needless to say, we've had social worker visits and things going on with my doctor, (positive, I think... maybe...) I will bring you guys up to date with whats going on there, I promise! Even if I have to get 'Anna' to write it for me (!), and finally getting some appointments through for various things, plus a few other issues - and I think it's the combination of all that, and a sudden intense burst of humidity here which has very effectively floored me, and kicked my pain, my blood pressure/pulse issues, temperature control problems, my light sensitivity, and various other problems into overdrive.

So honestly, it's been a miserable few weeks in some ways .... and at times sort of scary, if I'm totally honest. But I'm really really trying not to push myself, to just be gentle to myself and accept the infuriating new limitations, and to try more than ever before to pace with very firm limits,  (I'm not very good at it - so this is baby steps now) and not to overdo it. If I can learn to do this to even a fraction of the extent of Dominique or Laurel, I think it could improve my condition at least a little! It's just so darned hard to do, when I have so little ability anyway!


There's always humour and/or small happiness' to be found if you're willing to look, though, despite it all!! 'Anna' and I have found some happiness and even a little fun in beginning (slowly and painfully!) to plan out our garden in our minds (We want to start growing veggies ... and a bit more fruit than the small amount we currently grow, partly because it's just something we've wanted to do in a while, partly because it's so hard to live healthily on our small budget - and we're worried things might get only worse in that respect, considering both local and international decision making's right now!) We have to create the garden on pretty much no money, so we're finding creative ways to achieve what we want to do, for free or close to it. It really is kind of fun - even though I know I won't be able to personally bring any of it to be in reality.... and I can't tell you how annoying and frustrating it is to be so excited about a project that I often won't even be able to see thorough my window! This way though, I at least feel like I have put something of myself into the project. :) Sometimes you have to choose to be joyful, you know??



Parched earth waiting for the rain, by Josh Sommers
Heh, I'm not even sure if I'm making any sense at this point. My brain is pretty scattered at the moment on top of all the physical stuff.

Anyway, all in all, it's been very much a hard slog these last few weeks. I'm really hoping things will settle soon - but I'm concerned that with upcoming appointments, they'll only get worse. And so I guess I wait, like parched earth waiting for the rain, to see which way things turn as the weeks roll on. Will the outcome be rain, or more drought?? Well .... either way, I guess a little more of watching life pass me by can't be too bad at this point, right?! My internal body clock seems to have totally fried, anyway, leaving me with some minutes feeling like hours, some weeks feeling like days - time just passing me by.





photo by maliasvia PhotoRee


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Monday, 11 July 2011

Letter to my GP

Following the last 7 weeks of inaction from my GP (Read my post 'Am I Invisible???' to hear the story so far) I've emailed the below letter to her today, in a final attempt to get a response before I resort to contacting PALS, the Patient Advice & Liaison Service. I'm really hoping that my GP will realise just how long it's been since we last spoke, and will contact me. If she doesn't, I simply don't have the spare energy to keep pushing at her to do so ... and as I don't want to actually put a complaint in, (I'm concerned that that would only make the situation worse, plus she's a nice woman and I don't want to make her life any harder than it likely already is, working in a surgery with such low resources!), contacting the Advice & Liaison service seems like the logical next step.

I've never before, in 15 years of ME, gone this far in trying to get my doctor to help me. It feels very unnatural for me (my default setting is just to back off and not bother even asking for help, trying to manage it all alone) and I feel like I'm just a nagging child demanding attention. But I know in my mind at least that these are issues that I can't just ignore, this time - so I'm putting myself out there and hoping with everything in me that this situation finds some resolution, and that she will understand where I'm coming from and not just find me irritating.

I just wish I didn't have to push so hard to get basic needs met! It feels like a very vulnerable place to be, to be honest - like I'm putting myself into the bad guy position. It's certainly stress I can do without.

I'm crossing all my fingers and all my toes, hoping that this works!!!


Dear Dr X
I need to ask you, seriously, whether there is some reason that you haven't contacted me since our last phone call? It is now 7 weeks since you told me on the phone that you would calculate the amount of vitamin d I need to be on, and then contact me the following day ... only you never did. My phonecalls to the surgery and now emails (which took me a lot of energy to write) have gone unanswered and I'm at a complete loss as to what to do. 
I still can't get my appointment to see the gynaecologist, as I don't have the referrals paperwork from you (I need the reference number and a password, I believe, which could just be emailed if that's easier than posting the forms out!) and there are other outstanding issues that I need to discuss with you - all detailed in my first email, which I sent over 3 weeks ago now.

You told me that these things going on right now (cardiac, gynae, & vitamin d deficiency) were all urgent issues which needed to be dealt with straight away, yet they've all been put on hold for 7 weeks. I know from working in the NHS myself that this would never happen with a cancer patient (for example). It's not right that anyone, no matter what their condition, should be in  this situation where they cannot get help for serious issues. 
Please would you email me as soon as possible? I need to know where I stand, and more importantly, I need the vitamin d (and any other supplements I need additionally such as magnesium (to make the vit d absorb better) or calcium) to be prescribed so that I can begin to repair the damage that 8 years of being housebound has done to my body. 

I cannot send someone to the surgery to get my gynae paperwork or to discuss these problems with getting responses from you. Anna isn't able to get out and about very much and my mum's myeloma has just relapsed so her and my dad have enough to worry about without me asking them to call in at the surgery. 
We all found it rather ironic a few weeks ago when my mum had no problems getting a home visit by her GP (we live in the same house, but go to a different surgery) because she was in a lot of pain ... but she is nowhere near as disabled as I am. I'm willing to understand how busy you are and I know this isn't a simple situation because you are very overworked with few resources. But I'm not able to wait any longer, or to continue spending my energy on a fruitless search for help. I need a doctor who will listen, as you have ... but also one who will follow through on their promises and whose word I can trust. 

Kind Regards,

Susannah



Reader Question

Over the last few weeks I've heard from so many
 of you who have been going through very similar
 things with your own doctors. I'd love to hear from
 you if you've found any solutions to these problems
  and what those solutions were!!   ㋡


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Wednesday, 6 July 2011

Am I Invisible???

What are you meant to do when you're bedbound and your doctor is ignoring your attempts to contact her?

6 weeks ago, my doctor called me with the results of some blood tests, and about some serious cardiac & gynaecology symptoms I've been having. It had been pretty hard to get in touch with her at the time. My surgery refuses to do home visits for anyone unless they're cancer patients, because they don't have the resources. It's a common phenomenon in some poor inner city areas in the UK especially for people with illnesses like myalgic encephalomyelitis ... but it makes life pretty difficult when you can't leave your house to go to the surgery, and even phonecalls with the doctor are difficult to get about M.E. related issues. Eventually I managed to get a phone consultation with her about a minor infection, (how ironic is that when I have so many more serious things happening??!!??) and I took the opportunity to bring her up to date with more of what was happening with my health, which had led to the blood tests, and her phonecall with the results.

She was apparently very concerned at my vitamin d levels. I'm severely deficient (< 5!) - which is bad as it's probably been going on for years (I've been housebound for 8 years now) and my bones are likely in a serious mess as long term vitamin d deficiency causes Osteomalacia, which is essentially adult rickets. It's also likely that the deficiency is adding to my levels of illness in other ways, such as increased fatigue, pain, and muscle weakness.

We also talked over some serious cardiac & gynae symptoms (See my last post about these issues for more details) I've been having for some time now. She said she was referring me to see the cardiologist & gynaecologist specialists. She said that she would get the paperwork out to me, which I need in order to actually book the appointments - you don't even go on the waiting list until you phone the appointments office with the referral details. She said she was also going to try to get me booked in for 24hour cardiac monitoring before my cardiology appointment so that I'd have that information to take with me.

Additionally, she said she wants to refer me to specialists for bone scans etc because of the vitamin d issue, but would wait on it till I've seen the cardiologist & gynaecologist, because they are 'urgent' referrals (her words!) and I will only be able to cope with so much at once, physically speaking - any appointments outside the house are really major for me. She said that she was going to work out the dosage of vit d i would need (Possibly will need injections) and would call me the next day.

Now, here's the rub. That was 6 weeks ago, as I said, and I've heard nothing from her since, (despite phonecalls from me and my carer to the surgery, and an email from me to her work email address) apart from an acknowledgement that she had received the email, and a promise to reply within 2 days. That was a week and a half ago now!!!

She didn't even send me out the paperwork for the referrals, (though she did put the referrals through) despite phonecalls asking the receptionists to look into it for me, meaning that that's 6 weeks these so called urgent referrals have been put off. I finally received the cardiac appointments paperwork this week - we think the practice nurse may have posted them out - so have been able to go onto waiting list for that apppintment. However, there's still no sign of the gynae paperwork so I can't even get onto the waiting list. As for vitamin d, absolutely nothing is happening, which, considering how freaking worried she was, seems pretty outrageous to me!!!


I really, really don't know what to do now! I feel like I should be very angry ... and I think I am, in some part of my mind ... but mostly I feel really really upset and am losing hope that anything can ever get better with this kind of situation. Hope that I had only just begun to gain back after so many years of being chucked around by the NHS, and losing trust in them to the point that I have rarely seen a doctor over the years I've been severely ill. I really thought that perhaps this doctor would be the one to care enough to give me the treatment any other person with any other illness would automatically get. I guess I was wrong.

Every time I think about all this, I'm tearing up (unusual for me!) and honestly, feeling quite scared to be so alone with such scary symptoms. The cardiac problem especially seems to be getting steadily worse. When I'm upright for a while, like when I have a shower (sitting in my shower chair) my feet are now going so grey/mottled/blue that it's kind of freaking me out - watching that getting worse week by week is the kind of visual aid I can really do without!!! It feels sort of claustrophobic - like I'm trapped in this crappy situation, because there's nothing I can do to make her do the things she promised to do. Nothing I can do to improve this situation. I don't have the energy to fight any harder. :(

I honestly feel that there is no way that this doctor (who's very nice, by the way) would ever treat someone with a different, more accepted illness this way, and it feels so completely unjust and unfair. But there are few options for someone like me in the area I live. It's really hard work to stop myself from falling into hopelessness! I want to be happy and I work to be happy - but this issue makes that fight much, much harder! I feel utterly invisible ... and I'm just so, so tired of having to fight for the simple right to be treated like everyone else.





Am I becoming invisible??
photo by slurpiesandstraws ☮via PhotoRee




..... Read the continuing story in this r
elated post :
 Letter to my GP | The Thing With Feathers




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Saturday, 2 July 2011

Stanford's Dr. Jose Montoya on Chronic Fatigue Syndrome

This talk on the Chronic Fatigue Syndrome Team at Stanfords research, findings, & position on CFS was given a while ago now, back in March, but I've personally only just seen it, and am guessing there are others too who managed to miss it at the time it was first circulated on Youtube, so I wanted to share it here today.

It's so encouraging to see some real, positive research happening into CFS which doesn't begin with the premise that it is caused by psychological factors, and I found this fascinating viewing. Dr Montoya is very genuine and appears to sympathise very much with his patients, both for the physical hardships they are suffering, and also for the psychological harm they are undergoing because the majority of doctors (and the general public) dismiss our illness as 'not real', and the patients as 'malingerers' etc.

I particularly liked that he addressed the PACE trial so honestly, stating that it absolutely did not prove that CFS is psychological, or that psychological treatments can cure it.

Stanford have now set up a website where they will be posting relevant information on CFS as they progress in their research. You can view this site at http://chronicfatigue.stanford.edu/

This presentation is an hour and 15 mins long, but I highly recommend that you watch it if you're a CFS or ME patient or are simply interested in this area of research - it's worth the time!



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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


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Friday, 1 July 2011

Guilt : Trying to Find a Healthy Response

When someone you love is seriously ill, there's a relatively standard mix of difficult & painful feelings, and issues. Grief. Fear. Anger. Frustration. Sadness. Worry. Often guilt. But when you're also seriously ill yourself, it complicates things almost to the point that it's impossible to convey your feelings, (never mind deal with them!) because they're all mashed up and interwoven, and it's hard to separate out each individual strand, like fairy lights, retrieved from the loft just before Christmas!

photo by lovelypetal via PhotoRee

When my mum was first diagnosed with Multiple Myeloma 4 years ago, I was very ill, housebound ... but it was a better stage than most of the last 8 years. Mum was in hospital for many months, on and off ... including one pretty long stretch when she had a stem cell transplant and was in isolation. At the time we hoped, of course, that she would come through it and go into remission ... but we didn't know anything for sure, and I was really scared that I would lose her. My whole family was really struggling. I'm the oldest of 3 children, (my youngest sister being a full 10 years younger than me), my parents were at the time in their mid 50's ... and I felt responsible for keeping everyone else afloat. There were so many roles (most of which were natural for me, some of which were just plain hard work) that needed to be stepped into, and which I wished to carry out. I guess I was going for the full on martyrdom, and not in a good way!! I used my stress and the affect stress has on my body, forcing my intense adrenaline rushes into overtime so that I could visit my mum every couple of days, support my family, inform and liase with my mum's friends and relatives. It's my default stance ... the carer mode. Except that, of course, I was still struggling to cope with my own illness and disability.

I had ... and have, thank God, an amazing best friend, (I'll give her an alias, I think, as I'm not sure she'd want to be identified online, and I imagine I'll probably talk about her a fair bit in the future. So ... she'll be known as Anna) who's my carer and very much a part of our family. I'm not sure I'd have survived the last 8 years had she not been here. We're each other's rocks, in many ways, and the things we've been through together have brought us really close over the years! She supported and loved me through that difficult time, and I'm more thankful for her than I can possibly express!!

photo by eflon via PhotoRee

I knew, though, that everything I was doing would have a backlash on my health. My screwed up adrenaline kept me afloat in the short term, but around the time my mum was finally getting better, and things slowed down for us all, my body crashed in a big way, and came to a grinding halt. I've been bedbound more often than not during the years since then.

Now that my mum's illness has come back, my first instinct is to fly into that overstressed 'super-hero-aspiration' mode - but I just don't have the choice to even try it, this time around. I'm completely bedbound ... have been for about a year and a half this time. I can barely manage to make it to the bathroom ... never mind to the hospital to visit my mum.

The first time Myeloma darkened our doorstep, I'd say my primary emotions were grief and worry. (Though there were certainly many others in the mix too!) This time, guilt is overshadowing every other emotion to the point that I can barely feel anything else. I do know that it probably isn't fair to myself ... and that my mum would never want me to feel that way (just as she wouldn't have wanted me to run myself into the ground for her last time!!), but it's hard to teach yourself to react in a different way.

I feel guilty more than anything because I can't visit my mum. I talked about it with my dad last week, and he suggested, kindly, that I should just give her a phonecall every few days ... I had to admit that I can't even manage that right now. I felt ... feel ... so utterly useless and really, really embarrassed to admit that. It's hard to explain how conversation, especially over the phone, can be so completely exhausting that it's basically impossible. How can anyone possibly understand that?? I've been managing to email her short little messages several times a day ... and I think mum more or less understands why I can't do more, and that I'm trying my best. But I can't seem to stop myself feeling like a failure. I own those insecurities, though, and I'm trying to teach myself that it's ok to not be able to do everything ... that I don't have to be perfect. Not an easy lesson to learn!!

photo by i heart him via PhotoRee

I feel guilty that I can't help out around the house, do the cleaning and laundry etc for my dad. (Anna and I moved in with my parents, and my younger sister who still lives at home, a while after my mum went into remission. With my mum and me both unable to work, neither of us having much money in savings, and struggling to pay our mortgages, we decided to merge our finances by me buying a share in their house. So, I sold my home and we moved in. We lead fairly separate lives, though it's not a large house (I have one room, as does Anna, with shared bathrooms and kitchen), partly because I'm not able to spend much time with people as it wears me out so quickly, within just minutes at best ... & partly because my body clock is reversed so we're up in the night rather than the day. In the normal run of things, Anna, my mum, and my sister share the household chores... but we eat separately and do our own laundry etc. I'm unable to do any of that work right now, and with my mum now unable too, it's a pretty big burden on Anna especially, on top of caring for me ... and being sick herself. (She has had Post Viral Fatigue Syndrome for a year now, and we're both hoping with everything in us that it will clear up soon and not turn into something more insidious - you all know what I'm talking about!!!) My dad works really hard, often into the evenings, and now of course he has to fit in a hospital visit each day too. The one thing I desperately want to be able to do is breeze through the house, cleaning as I go ... but I can't, and I have to watch my friend and my dad struggle, instead. It's beyond frustrating.

It feels really complicated, dealing with worrying about my mum's health at the same time as so much going on with my own. (My blood pressure issues seem to be getting even worse. The things the doctor promised to do have yet to materialise - though I've managed to get hold of her email address and am hoping the email I've sent will push her into action! The extra stress on top of all the normal stuff seems to be making my pain worse and is sapping my energy. My neuro issues have been getting really bad ... struggling to communicate because I keep forgetting so many words and losing track of what I'm saying half way through sentences.) And of course we're all very aware that this is a long term situation. (Mum has started a new treatment this week, which has just recently started to be used for Myeloma, called Velcade. It's shown some great results for Myeloma, so I'm really happy that she's able to receive this treatment!)

The situation is complicated even more by the fact that until my mum got ill, she was actually helping Anna with some of my care. Not huge things, but little things that build up, like feeding my dogs, taking Kiya to the vets, (Kiya, one of my westies, has a severe chronic skin problem and needs regular vet visits) and doing a bit of my laundry. In essence, I've lost a carer, which while Anna is ill also, isn't the best of situations. We don't know how things will go with my mum's treatment, of course, but we certainly can't count on mum returning to her former amount of mobility - and in any case, the likelihood is that it will be a fairly long road back to recovery.

I felt horribly guilty that my 60 odd yr old mum was caring for me anyway ... and then she got ill and I can't help but worry that her doing those extra jobs could have put extra stress on her body and put her into relapse quicker than might have happened otherwise. And now I feel guilty that I'm also worrying about myself and Anna because mum can't help us anymore. (Not to mention worried that the extra work for Anna will make her sicker too!) I do understand in my 'head' that these are reasonable concerns, but in my heart, I feel guilty, like I'm making it all about me when it should be about my mum. It's just such a horribly complicated and interwoven situation!!!

photo by missrains via PhotoRee

I just wish things were different. I wish I could be the carer instead of the one who needs to be taken care of. I wish mum's cancer had returned at a time when I am able to do more ... or that I hadn't pushed myself so hard last time. I wish that the NHS had done more for me over the years so I hadn't ended up in this position in the first place!!!! I wish my family understood a little better what I'm going through so that I didn't have to worry that they feel like I'm letting them down. I wish I wasn't a burden on the people I love! .... But these are all things that I can't change. What I can change is my response to the situation, and to my own feelings.

I'm trying really hard to deal with this in a more positive way this time ... in a way which lets my family know that I love them and am supporting them, but without doing any more damage to myself than I can help. I'm working on not beating myself over the head with guilt ... no easy feat, but I do realise that it doesn't help anyone for me to do that, and that it wouldn't really be fair to myself either. So I'm trying instead to take care of myself too ... whether that means talking about how I'm feeling, looking after my own physical health, or simply eating cake with Anna! ;) Guilt really is a waste of effort, and I don't want to waste any more of my time on it! All the same, it's pretty difficult to stop feeling it!!



I'm really glad that I've started to be a bit more open about my health problems and how ME affects me, over the last few years, so my family do at least have a bit more understanding of my illness (my mum especially) This would be a much worse situation had I not got a bit braver!! I also feel very lucky to have got hooked into the ME community over the last year or so, because you guys are all so amazingly supportive!! I'm thankful that I have people around me that I can be honest with. I hope you all realise just what a massive difference you are making to my life! :)

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I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)


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