Can Someone Help?

[Tommie]

I am new to forums and MDS. I was diagnosed earlier this year after feeling ill for about a year, I had blood transfusions but the only benefit was short term, so I was then put on Anaresp and Ratiogratsim and although my blood counts showed a big improvements, I continue to feel continually exhausted. My memory seems to have been affected as well. I used to be so good at remembering things, such as appointments, birthdays etc, now I have to write everything down. I also get confused I can forget where I work even my age.
I have been told that I should not still be feeling so exhausted but I am. I have fallen asleep at work, on a bus and can sleep for a couple of hours in the afternoon and then sleep 10 hours at night. I feel weak, and I am just so fed up all I want is my life back.

I have done lots of research and I have read that other people do still feel tired and weak on treatment.
I have been told by the company I work for that I am not to discuss MDS at work, which I find hard as if I am having a bad day I think my colleagues have a right to know why I am so lethargic. They have been good in other ways by reducing the hours I work.
I would love to near from any other patients that find they have the same symptoms.

As I said this is all new to me, I have found the MDS support have been fantastic and Sophie has given me so much information and has time to talk which is great.
I hope someone out there can tell me I am not going round the bend.

[Jayne]

Dear Tommie, you are not going round the bend! You are just very tired and when we are tired we cant remember things as well as we should. I have this as well. In fact I carry a book around with me which I call my 'brain book'. I write everything in here....meal plans for the week, things I have to do each day/week. Anything that I want to remember. I also have my diary. I do find it helps to write things down, I have lists everywhere!

I am glad you are in touch with Sophie, like you say she is amazing and a really good support to us all.

I dont know the drugs you are on so I can not comment as to whether they affect your memory, but I think you should mention all of what you have put in your message to us to your consultant/Professor. They are there to help us.

I think we would all like our lives back to how they were, but sadly that isn't going to happen so we have to accept what has happened. It is who we are now. I just do everything at a much slower pace now, and my kids laugh at me when I say something wrong. A few months ago I told them to put their socks in the slow cooker! I'm always saying stuff wrong....sometimes they say things wrong and then they say 'oh no, we are turning into Mum!' We went to the seaside a couple of weeks ago and my husband pulled me up the hill and my son pushed from behind, I still went at a snails pace. Some things we have to accept, but some things we can definitely make better and I am always looking for the latter.

You do sound down and fed up, and this really wont be helping your feeling of lethargy. I really do think you should speak to your doctor again and tell them just how tired and fed up and down you are. If you can look on things more positively it does help, and maybe they can help you achieve this.

Take care and keep in touch.
Jayne

[Graham]

Hi Tommie,

Have read your messege and note that you are on Ratiogratsim and Aranesp, they are the drugs that I self administer by Injection. You do not state your age or type of MDS.

I am RCMD that is Refractory Cytopenia with Multilineage Dysplasia. It does sound that your red and white cells are both effected and maybe platelets. My view is that it is the illness itself and not the treatment with Aranesp and Ratiograstim that is making most of us tired. I think it is good that you are managing to work albeit reduced hours.



Before MDS I was diagnosed with Chronic Fatique Syndrome so in effect have suffered a double whammy. I get by on graded excercise. My Doctor always urged me to run, Gym work and walk. Sadly I am reduced to walking only now. However I do not thing that I could work again, retired early with my M.E. (chronic fatigue)

***There is a famous study on chronic Fatigue that suggested graded excercise helps. Maybe this could be tried on MDS patients who also suffer excessive fatigue.

With regards not mentioning you illness at work. It does seem strange that you are not allowed to mention it and that as a result your work colleagues do not know. Surely you can discuss your illness outside of strict working hours. (breaks lunch times etc. )
It is difficult for muggles (non sufferers) to understand the nature of our illness.
MDS is complex and differs from patient to patient.

Side effects on drugs can differ, that to from patient to patient. So do as Jayne stated speak to your Doctor/Consultant.

We are all trying to hang in there. In my case trying to attempt to post a coherent message.

Graham

*** What does Sophie think

[Tommie]

Hi Graham thank you for getting back to me and Jayne too. I can't tell you how good it is to know I am not alone.

I have found the clinics to be confusing, I don't know what risk group I am in. I have seen a different Doctor each time I have been, so you can't get a rapport going, each time they have to read through the notes.
I know they are so busy it must be difficult to coordinate the same Dr every time.

Sorry you have had to give up work, I feel like it but feel I must push myself to go for keeping me sane. I find it more and more difficult to keep going most of the time, but if I can just do maybe another year I will be then be coming up 57. My husband is 63 and has 2 years before retirement.

I also suffer from chronic back pain. I had major surgery 10 years a go to pin and screw my spine together due to degenerative disease. 18 months ago it flared up again and I had to have the metal work removed and since then the pain has got worse and worse. I have been on strong pain killers I have been on them for so long that I know my body and know they are not the cause of the fatigue which one medical person has suggested. I have never know tiredness like it, I am sure you know what I mean, your eyes are so heavy and you can't put one foot in front of the other you just have to sit down and usually fall asleep.

Anyway, sorry to near of your chronic fatigue syndrome - It has been suggested that maybe I should be tested - they tested me for Addison's and one other similar illness but both came back negative. You have really given me a boost knowing I am not alone.
Take care
Tommie

[Tommie]

Hi Jayne it means so much that you and one another replied.

I don't know how you cope with a young family, you are marvellous. I used to look after my grandsons a lot but the I started to get more and more tired and I found I just could not manage a very lively 4 year old and 9 year old boys! My husband is great and we have managed to take them out a couple of times in the summer.

I am o Anaresp and was on Ratiogratsim. Right now I am on only. Anaresp 300ml a week. When I first started on the treatment the blood counts got a little out of control- my RBC was 16.2! My GP said that alone would not help with feeling exhausted as the blood was thick and was making the heart work harder. I could not win!

In my reply to Graham who also replied I explained that I suffer from chronic pain too.

I did not mean to sound so down, reading my post back today I could see where you were coming from! I had just done 4 very busy mornings at work and was having a lazy day when I wrote it.
I want to keep working for as long as I can because it gives me a reason to get up get dressed up and also I would be so bored and end up depressed. I do wonder some days how I do it as I feel so sleepy and forget what I was doing.

Your idea of keeping a diary is excellent, I have notes and the calendar but to have everything in one place is excellent.

How are you coping with planning Christmas? I have been doing little bits and pieces when I can. I am almost done which is amazing. I have not done anything about Christmas day arrangements yet, better get my skates on.
Once again Jayne, thank you I feel like you have given me a real boost.
I would like to keep in touch, I am 55 female (despite the name).
take care.

[Jayne]

Hi Tommie

Yes you did throw me, I thought you were male, sorry!! Although I have made that mistake before >

As you suffer with your back this wont help either, constant pain can make you feel fed up.

First things first, I really think you need to see someone who specialises in MDS and who can explain which type you have. It seems very wrong to me that you are being passed around and that you are being treated and yet they haven't explained things properly.

I also have the RCMD version. My Hb dropped to 7.5 a couple of weeks ago which is why I had my first transfusion. I have been told they wont let it drop this low again. I am going on the 21st to discuss future treatment and I have asked if necessary can I have a top up!! It seems so weird asking for a top up of blood!

Regarding Christmas...I am ready woohoo! I wrapped all my childrens presents on Friday night and then my daughter and I wrapped all the family presents yesterday. Some are under the tree and some are in bags ready to be taken to my in-laws as they live about an hour and a half away.

I have made my Christmas cake (in October I think) and have been feeding it brandy. Gave it a top up yesterday and it smells so delicious. I want to marzipan and ice this week as we have friends staying with us next weekend. I have also got a gingerbread house to make...although I have cheated and bought it from Lakeland, it comes complete with figures, we just have to glue it together with icing and decorate with sweets. It's a hands on family thing to do, also this week!

I have got myself so organised because I was scared/worried that I wouldnt be able too, and so I did everything whilst I knew I still could. Now all that remains it to relax and enjoy.

As for tonight, I am just about to switch off, have a nice bath and go to bed with the intention of lights off before 10.

I'm glad I've give you a bit of a boost, probably just worn you out with all this chatter now!

Take care and maybe talk again tomorrow
Jayne x

[chris]

Hi Tommie

So sorry to hear how exhausted you are. I totally agree with what Jayne has said i.e. you do need to keep telling your medical supporters the extent of your fatigue as - even for MDs patients - that level of tiredness sounds extreme to me. Maybe the Aranesp dose needs to be monitored more closely? Maybe you can push for more tests? A close friend of mine has Addison's and I can vouch for the extreme fatigue which she suffers and this disease can be fatal if left untreated. If she forgets a dose of medication or is subject to additional stress e.g. an illness or social occasion, she becomes so fatigued and confused because her blood pressure has dropped so low. That also affects her memory and concentration which, as a former Deputy Head of a top-notch Girls school, used to be amazing!! It is very hard to accept these changes but without acceptance and "working with it", it is difficult to remain positive.

Do you also suffer from low white cells? If so, I think it would be highly unfair of your employers to ask you not to talk about your MDS as your colleagues need to know to steer clear of you if they have any active infection to which you could be more susceptible? It is your employer's duty of care to you to ensure that "reasonable adjustments" are made to enable you to continue to work safely.

I love Graham's reference to Muggles - giving away our Harry Potter credentials here!! But it is so true, most people (including us before we were diagnosed!) have never heard of MDS. On the Harry Potter theme I also find it amusing that with a stem cell transplant, if you don't have a sibling match you have a Matched Unrelated Donor!! I have my brother in reserve and told my kids I'm glad of that as I don't want any Mudblood (derogatory term for a Muggle in Harry Potter!).

Jayne is amazingly well-organised and, in a strange way, having something like MDS can be a positive thing as it does make you focus on the important things in life and pace yourself accordingly. Tommie, you should ask for help from your friends and family and not feel you always have to do everything yourself. There are some of us (me for instance!) who are not so well-organised but because my red cells are OK I cannot even blame the MDS so if you've already got even a bit organised you are doing well!!

I really worry about the crowded shops and people with lurgies at this time of the year so am very,very glad of some excellent service from Amazon. Armchair ordering is great!!

Take care and I hope you can find a resolution for your fatigue. You might also ask to see your Occupational Health specialist as they have some excellent strategies on managing fatigue. Sheldon got a leaflet from ? Macmillan/ Leukamia research which might also help?

Bst wishes

Chris

[Tommie]

Hi again Jayne, glad you have managed to get your shopping done it does make you feel better when you know your organised, Christmas day will be here before we know it.

Sounds like you have young children. Mine are both boys the eldest is 35 lives in Scicily with his girlfriend, they both teach English. My youngest went to Uni met his now wife and left uni with a gorgeous son. They then had another little boy who started school in September.
I got married young started a family and my marriage broke up after 7 years. Then I met my husband and we have been together for 30 years. He is my rock just amazing and takes such good care of me. He always takes me up to Kings I can't always remember what they say so he keeps a record and asks any questions.

I am going to try and find out more information next time we go, what type etc.

Back to work this morning after a 4 day weekend, it was tough I was so tired by the time 1 pm when I finished. I had a nice sleep this afternoon!

Take care I'll keep in touch with you if that's ok.
T

[Jayne]

Hi Tommie, of course it is ok to keep in touch.....I want you too!

I have 2 children, Matt who is 16 in January and Jess who is 14 in February. They are beautiful children. My son doesnt ask me any questions regarding my illness but Jess does. I dont lie but I do try to soften the answers!

However, on Thursday, after my blood transfusion we all went to bed and I woke in the morning to a text from my son!! He said he hadn't been able to sleep so had googled MDS and had decided he wanted to do something to raise money for Anthony Nolan, he had googled ideas and came up with skydiving!! He asked if it was ok with me, but it didnt matter what I said because he was going to do it anyway!! I was really touched to be honest. We spoke about it a lot at the weekend and we are going to try and arrange it for next Spring (he has to be 16).

It must be hard having your eldest son so far away but I assume your youngest is close to you as you said you sometimes looked after your grandchildren and took them for days out. My husband is also amazing, I think we are lucky ladies!!

I'm all for a power nap/afternoon sleep.....I just dont get to do them often enough!

Jayne x