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Disappointed and frustrated

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Natalie123

Natalie123

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As a lot of you already know, I have been feeling unwell for the last 8 years since diagnosis. I struggle with exercise, can't do stairs and struggle to walk into town. It has caused me to suffer from anxiety and depression and I have had to quit my PhD because I can't walk around the lab or between departments and just couldn't cope with the added stress.

Since quitting my work, I thought I was getting somewhere, my nurse and doctor are recommending the pump, or a change to animal insulin, I have had a cgm for 3 days which showed bad DP, and am getting help with my depression. BUT ... I am still feeling ill, and getting more desperate to sort it out.

I don't know if my illness is caused by poor control (which is odd because apart from the DP I am fine) or because I would be better with animal insulin (suggested as an alternative by my GP) or if I have something else entirely - like CFS (had blood tests for everything else- all normal). :confused: So DSN said she would push to get me a consultant's appointment urgently because I am so upset.

I got the letter today - 9th December 😡 What use is that!! I don't see the point in life if I can't function like a normal human being, I have less energy than my Grandparents (literally, much less!). I am sooooo annoyed, steam is coming out of my ears (we need a pic for that please Alan 😉 all I want is to find out why I am feeling so ill so that I can either get treatment and get a job (no income at the moment!) or at least accept that I have something and I'm not going insane, or maybe I am :confused:
 
I hope that things start to lift for you a little Natalie. Hopefully if you told your DSN they might be able to poke the consultant to being more sensible.

However...
Natalie123 said:
...I struggle with exercise, can't do stairs and struggle to walk into town....
Click to expand...
Having met one person outside of these forums, and there being a few in these forums - but aren't those symptoms slightly like ME (or CFS)?
 
Hi Natalie, some times life is not much fun, especially when you don't have the answers you want or need.

Hopefully something will happen soon and you will get all the answers and help you need. Can't offer much help I'm afraid, but we are all here to support you, which I hope helps.
 
Aww sorry to hear that Natalie :(

You are right... when you've been struggling for a while and then begin to move towards a solution any additional delay feels awful.

Any diagnosis that does not come quickly/simply is very hard work. Lots of things to be tried and tested while the Docs try to work out what's going on...

Hope you get proper answers soon.

M
 
Hi Mark, Yes, I have just looked it up after it was suggested by someone I met ages ago. I didn't look before because I didn't want to know and I was still of the mindset that it was my fault - it started suddenly during my GCSE exams, I wasn't walking to school anymore and my Mum said I was just lazy. I tried waking up to go for a walk / run in the morning but it made things much worse. Having just read through the info on CFS / ME it fits my symptoms almost perfectly. If it does turn out to be CFS I will be so angry that I was left like this for 8 years (16 - 24) and no one took me seriously (I get it's all in your head or your just stressed or tired rather too often - I mean it isn't normal tiredness, it is impossible to explain to anyone who hasn't felt it and who is tired for 8 years anyway?!)
 
Hi Natalie, you sound rather like me. I have had ME for over 25 years and the symptoms you describe are very similar to mine.

I would get some expert diagnosis though, but in the meantime dont do what is often suggested, "do a little more each week", thats what I did for many years as it was recommended, but its all boom and bust. Try instead to deliberately do 25% of what you think you would be able to do, and see if you feel a little better in a month.

If I can help dont hesitate to ask.🙂
 
Thanks Slipper, I am glad to hear that you feel similar to me, in fact I feel very relieved. I am going to go to see a doctor soon I hope, and I will take a written list / letter with my symptoms on and also a print out of the info on the nhs website and see what they say. It is hard to get a doctor to see past the diabetes sometimes. I have phoned up diabetes uk careline and they said that with my resonable control I definitely shouldn't be feeling this bad, the nice lady said to ask the doctor "If I was another patient who wasn't diabetic and had these symptoms what would you suggest?" seems sensible way to get around the "everything is due to diabetes" attitude!
 
That sounds a good plan Natalie and I wish you luck. Take care of yourself as best you can in the meantime.
 
Natalie123 said:
I am sooooo annoyed, steam is coming out of my ears (we need a pic for that please Alan 😉
Click to expand...

angry-face.jpg
 
Aw big hugs Natalie, when we met at the meeting you came across as a lovely and bright young girl, I'm so sorry that you are feeling this way. It can't be nice at all!

The wait for appointments can be horrendous and when the big D is moseing along nicely, these 3/4 months wait don't seem too bad, but when something is not going right, the wait can be excruciating! however, I have a really good relationship with my DSN and consultant, so much so that if I needed to be seen quicker, I have a contact with the consultants PA who can usually get me in sooner...it really really maybe worth contacting your hospital and speaking to the PA/secretary for your consultant. If they can't get in sooner, explain that you'd like to be contacted if a cancellation crops up!

Good luck with it all girlie, and hope you start to feel better very soon!
 
Sorry you are so fed up Natalie. I know that the 9th December seems ages off but it will be here quicker than you think.

Could you have another word with your DSN and see whether you could be seen if they have any cancellations?

I hope that things start looking up for you soon.
 
So sorry to hear that you're upset Natalie. I'd also try phoning just in case they have had cancellations, on a couple of occasions I've managed to get in earlier.

Hope they can help & provide some answers for you.

Sending lots of hugs xx
 
Hey Natalie, your symptoms sounds a lot like M.E for sure.

My doctor suggested that this was a possibility for me after getting my anemia sorted but still feeling tired and having headaches frequently.
The more I looked into it the more I can relate to symptoms, i've had involuntary twitches for well over a year now and always thought it was anxiety or something but it always got worse in the evenings! Turns out that it is a symptom of ME.

I've been lucky that my doctor saw through the diabetes, since my Hba1c was only 5.6% he was certain that it shouldn't be anything to do with that! I've still got to get all my bloods done but my symptoms are so widespread its hard to pinpoint them to something else?

Let us know how you get on 🙂 I really hope they do look past the diabetes!!!!
 
Thanks everyone for you messages. I took a letter with me to the doctors and explained how I felt. She agreed to look into CFS / ME for me and I am going back in 3 weeks. She also wants me to specifically mention CFS / ME to the nurse who I am seeing on Thursday in the hope that she can refer me to someone who can help. Although she did agree that I do suffer from chronic fatigue, it is hard for them to give me a firm diagnosis because the diabetes, depression and anxiety are all interlinked. I argued that I really want to have a "name" for my symptoms because I am fed up of people thinking that I am exaggerating, making it all up or that I am just lazy. I'm not really sure if there was an outcome from the appointment but she kept my letter and promised to do some research, so I guess I have made some progress ... Will let you know how I get on on Thursday x
 
Natalie123 said:
Thanks everyone for you messages. I took a letter with me to the doctors and explained how I felt. She agreed to look into CFS / ME for me and I am going back in 3 weeks. She also wants me to specifically mention CFS / ME to the nurse who I am seeing on Thursday in the hope that she can refer me to someone who can help. Although she did agree that I do suffer from chronic fatigue, it is hard for them to give me a firm diagnosis because the diabetes, depression and anxiety are all interlinked. I argued that I really want to have a "name" for my symptoms because I am fed up of people thinking that I am exaggerating, making it all up or that I am just lazy. I'm not really sure if there was an outcome from the appointment but she kept my letter and promised to do some research, so I guess I have made some progress ... Will let you know how I get on on Thursday x
Click to expand...

I'm glad you've mad some progress. It's horrible when you feel you're not listened to.
Good luck with your appointment on Thursday, I hope it goes well 🙂
 
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